MartyBeyerIntro.doc
EXPERT CLIENT REVIEW REPORT
By Marty Beyer
October 2004
I. OVERVIEW
The Center for Public Representation filed a lawsuit, Rosie D. v. Romney, on behalf of thousands of children with serious emotional and behavioral disabilities who need mental health treatment in order to remain with their families and in their home communities. According to the Complaint, in Massachusetts at least 3,000 of these children are inappropriately confined in psychiatric facilities, congregate care settings, or their birth or foster families without medically necessary services.
The Center for Public Representation asked me to assist in designing and implementing a client review of a sample of children who received Medicaid mental health services during late 2002 and early 2003 in Massachusetts. The purpose of the review was to analyze the needs of these children and the services provided to them and their families, and to form an opinion about whether their needs would be met by intensive home-based services.
II. BACKGROUND AND EXPERIENCE
I am a clinical/community psychologist who has consulted with numerous states on systems of care and home-based services for children, including those in juvenile justice and foster care. I have consulted to counties and the state in the child welfare reform in Alabama, documented in Making Child Welfare Work (a 1998 publication of the Bazelon Center for Mental Health Law). I also consulted to counties and the state in the Oregon child welfare reform. The practice I helped develop in both states is described in my publications, “One Child and Family at a Time: Strengths/Needs-Based Service Crafting” (Caring, 1996) and “Strengths/Needs-Based Child Welfare Practice” (The Prevention Report, Fall 1997). I published my training materials in a Strengths/Needs-Based Service Manual (National Resource Center for Family-Centered Practice, 1999).
I am currently working with ACS, the child welfare agency in New York City, on implementing visit coaching, a method of helping families learn to meet the needs of their children in foster care (a manual for this practice is in press). I am a member of the expert review panel appointed by the federal court in Katie A., a class action lawsuit regarding the lack of home-based and family-based services to children in Los Angeles County’s child welfare and mental health systems. I have recently been asked by the Annie E. Casey Foundation to assist the Maine child welfare system in transitioning children from residential placements to their families and communities. I also have assisted states in designing delinquency services and have written and provided training for judges, lawyers, probation officers and residential staff on how immaturity, trauma, and disabilities affect teenage behavior and must be considered in designing rehabilitative services. A fuller description of my education, training and experience is set forth in my curriculum vitae (attached).
III. PROCESS OF THE CLIENT REVIEW
The Center for Public Representation asked Marci White and me to design and implement a review of Medicaid-eligible children to determine whether they needed home-based services. Over the course of a year, we planned and carried out the review, asking the plaintiffs' counsel to gather records that we needed to make informed judgments concerning home-based services. Marci White and I decided on the characteristics of the children to be reviewed. An independent research expert, James Conroy, advised us on the methods of selecting a random sample. Marci White and I decided on what provider information, family data, medical records, and interviews were necessary for the review.
A. Sample
At our request, the plaintiffs asked the defendants to provide from available service encounter data a list of Medicaid-eligible children who had received certain behavioral health services. Based on our professional experience and in consultation with the other experts, Marci White and I advised the plaintiffs that a cross-section of children would best be represented by obtaining a listing of children from four different categories of services provided to Medicaid-eligible children under the age of 22. This would ensure that children with a broad range of mental health treatment needs would be included in the client review. The defendants provided encounter data from November 2002 and April 2003, from which the sample was drawn. The November 2002 and April 2003 dates were used only as a designated "point-in-time" for obtaining information.
The four service categories, and the inclusive corresponding services within each group, are as follows:
1. Inpatient (administrative approval - youth - full rate; post-acute administratively necessary days; sub-pay post acute administratively necessary days; inpatient administratively necessary days; inpatient DMR; inpatient psychiatric; and administrative necessary days awaiting DMH hospital).
2. Residential (residential psychiatric - administratively necessary days; residential stabilization services; residential psychiatric; enhanced residential care; and ICI case management).
3.Crisis (child and adolescent ESP encounter under 24 hours and 72 hours; crisis stabilization bed under 24 hours and 72 hours; community crisis stabilization over 72 hours; and mobile crisis intervention)
4. Home (therapeutic foster care; family stabilization, phase 1, 2 and 3; family stabilization - step down -professional staff and paraprofessional staff; family stabilization - diversion -professional staff and paraprofessional staff; placement. stabilization services; community support; and shelter plus community support).
We further limited the inpatient category to children who previously had been hospitalized at least once in the past twelve months prior to receiving the listed inpatient services during April 2003. Similarly, we further limited the crisis category to children who previously received the listed crisis services in the past twelve months prior to receiving them again in April 2003.
In addition, we asked plaintiffs’ counsel to obtain the following data for all children in each of the four categories: (1) child's name; (2) address; (3) Medicaid eligibility category; (4) DSS, DMH, DMR, or DYS involvement; (5) all services provided during the past 12 months (April 1 - March 31, 2003), including date of service, provider of service, provider's address, and cost (claims paid) of service; and (6) total cost of all services provided to that child during the past year.
Marci White and I concurred that with four reviewers, a total of 40 to 50 children could be effectively reviewed, given the time available for obtaining release authorizations, soliciting and obtaining provider records, reviewing records, and conducting on-site client and provider interviews. We relied upon the expertise of Dr. James Conroy, director of the Center for Outcome Analysis in Pennsylvania and former director of Temple University's Institute on Disabilities, to determine whether this sample size was valid.
We also relied on Dr. Conroy’s expertise to determine the number of clients to be reviewed within each identified service category. He recommended that the total sample should include the following number of cases from each category: Inpatient services, 10 children; Residential services, 15 children; Crisis services, 10 children; and Home with other mental health services, 10 children.
It was necessary to obtain consent from the families, guardians, or legal representatives of each child in the sample. We decided that a much larger pool of children had to be drawn than the number we actually would review because we knew that some contact information (addresses) would no longer be accurate, and we recognized that some guardians / parents would choose not to participate in the sample. We asked Dr. Conroy to both determine the number of children to be selected for the sample, and to draw the sample from the computer lists provided by the defendants and managed care organizations.
The plaintiffs attempted to obtain release authorizations from guardians, parents or DSS for each child whose name was randomly selected in the sampling process. We received fewer than anticipated releases on behalf of children in the crisis cohort. Again, we turned to Dr. Conroy, who drew another sample of children from the crisis category, and subsequently the plaintiffs requested and received additional releases in the crisis group. Prior to the actual review, we asked Dr. Conroy to confirm the adequacy of the sample – to verify that the numbers of children participating in the review as well as those in each subgroup – would generate reliable information. Ultimately, Marci White, two other reviewers and I reviewed 35 randomly selected children and eight named plaintiffs for a total of 43 children.
B. The Review Process
1. Goal - The purpose of the review was to consider the history, mental health treatment needs and services received by the children in the sample. We reviewed the children's current mental health treatment needs (September 2004), and their past mental health treatment needs. The goal of each review was to form an opinion, if possible, whether the child needs and/or has needed intensive home-based treatment services.
2. Activities - Marci White and I decided that the review would rely on interviews (in addition to a record review) and would not be limited to any point in time. The case review included: a review of available records from state agencies and clinical providers for each child; face-to-face meetings with children in their home, school, residential/hospital placement or other setting; in-person interviews with parents or guardians of children whenever possible; and in-person or telephone interviews with key providers for an individual child (individual or family therapist, psychiatrist, school personnel, case manager, behavior specialist, family support worker, social worker, front-line staff in a child's residential program, DSS worker). We selected the individuals to be interviewed based on information included in the records.
3. Materials reviewed – We instructed plaintiffs' counsel to obtain all available records from service providers and state agencies for the past three years. These records were copied and forwarded to the respective expert assigned to each client. Additionally, service encounter data for the children was also provided.
4. Psychiatric consultant – Each of the four expert reviewers forwarded at least one case to Dr. James Greer, a child psychiatrist who works with children with serious emotional disturbance and provides home-based services (in Rhode Island) funded by Medicaid. Dr. Greer made himself available to consult with us as needed.
5. Cases reviewed - I was assigned the following 11 children, including five named plaintiffs and six children selected in the sample. All 11 are living at home or residing at programs/facilities in western Massachusetts.
1. Sarah B., age 15: Random sample, residential category
2. Raymond B., age 12: Random sample, home category
3. Rosie D., age 16: Named plaintiff
4. Joshua D., age 14: Named plaintiff
5. Devin E., age 11: Named plaintiff
6. Shentelle G. age 15: Random sample, residential category
7. Richard G., age 16: Random sample, residential category
8. Tyriek H., age 10: Named plaintiff
9. Sheena M., age 19: Named plaintiff
10. Robert T., age 12: Random sample, home category
11. Chelsea T., age 14: Random sample, residential category
6. Schedule - My on-site reviews were conducted between September 18, 2004 and September 27, 2004. I had also been on-site in August 2003 to interview five named plaintiffs, their families and respective therapists / providers. In September 2004, I re-interviewed four of the five named plaintiffs, all five families and most of their respective providers. Plaintiffs' counsel were responsible for the logistics of the review, including scheduling appointments and making other arrangements.
7. Review guidelines - Marci White developed guidelines, based in part on her discussions with me, for reviewing the available records, conducting interviews, and forming opinions. These guidelines included collection of demographic information, an analysis of the child's placement history, the reasons for placement in residential programs or hospitals, and the role of the case manager. In addition, the guidelines required a review of the record for assessments and recommendations, documentation of improvement in the child's condition, involvement of family members in planning services, the effects of services on the family, post-discharge services following hospitalization or residential care, and medications prescribed.
8. In order to form an opinion about the need for home-based services in each case, I used the common understanding of that term among mental health professionals. Plaintiffs’ counsel informed me that the defendants in this case requested a precise definition of home-based services. I was asked to respond to this request by describing what mental health professionals commonly understand home-based services to be. I consulted with several other experts for a well-accepted description of home-based services. Based on the federal Child and Adolescent Services System Program (CASSP) principles, the literature on evidence-based services for children with serious emotional disturbance (SED) and their families, and consultation with other experts, Marci White and I distilled the critical elements of home-based services: assessment, service design driven by strengths and needs, and interventions that are coordinated and integrated by a family-centered team. We provided the following specific description of home-based services that reflects the federal principles and professional consensus in the mental health community:
Home and community-based services, sometimes referred to as wraparound services, are a well-established behavioral health intervention for children designed to meet the child's needs in his/her home and home community. They may be provided in the child's birth, foster or adoptive home, or in the community where the child lives. The planning and provision of intensive home and community-based services require a specific, individualized process that focuses on the strengths and needs of the child and the importance of the family in supporting the child. Intensive home and community-based services incorporate several discrete clinical interventions, including, at a minimum, comprehensive strength-based assessments, crisis services, case management, clinical teams, and individualized supports including behavioral specialists. These services must be provided in a flexible manner with sufficient duration, intensity, and frequency to address the child's needs.
Based on my experience and the available research, it is clear that individualized services must be
designed to meet the unique needs of each child and build on the child's and family's strengths. It is essential to have birth, adoptive and foster families involved in planning services with professionals from mental health, school and other agencies. The complex needs of these children require integrated services. Thus, team planning and integration are essential and cannot be separated from the interventions. Effective services for severely emotionally disturbed children require both enhanced care coordination and often daily individual care for the child and guidance for caregivers. Children do better in families when those families are provided with home-based services. Residential care and out-of-home placement can be avoided when a multidisciplinary, family inclusive team implements integrated and intensive services at home and in the community for the child and guidance for the family.
For each child in my review, I was asked to form an opinion as to whether s/he currently needs or previously needed intensive home-based services to address his/her mental health needs. I formed my opinion by using the above-referenced definition and after reviewing the information contained in the case files and the information obtained through on-site interviews. I considered that intensive home-based services might be needed for among the following reasons: separation from family, including siblings, was likely to cause the child to deteriorate; the child's need to achieve permanency; the child's behaviors were becoming more challenging; the child was deteriorating in school; the child had impaired social skills; others felt threatened by the child; the child engaged in pre-delinquent behaviors; the family was unable to manage the child without assistance; previous treatment did not result in the child getting better; less intensive outpatient services would not meet child's needs; hospitalization was too restrictive; residential treatment was too restrictive; it was important for the child to be able to function in the community; and it was important for the family to be able to manage the child. In cases where I believe the child now needs or needed intensive home-based services, I included my rationale, and identified the services provided, services that were needed and not provided, and how the child's condition had changed.
IV. THE CHILDREN REVIEWED
SARAH B.
Sarah is a sad 15-year-old girl (DOB 11/11/88) in the custody of the Department of Social Services (DSS) who has been in residential care since 2001. She says no one loves her because her birth parents abused her, her adoptive parents abandoned her, and multiple foster home placements have fallen apart. Although she has sustained significant losses and trauma, she has received grossly inadequate mental health services. Sarah's case shows deplorable decision-making by DSS; ironically, her only long-term relationship is Dale Whorl, her DSS social worker.
Sarah needs a placement with a well-trained foster family with intensive home-based services. These supports should include a therapist skilled in trauma treatment offering Sarah and her new family behavioral guidance and overseeing the design and implementation of a crisis plan; and an in-home therapeutic behavioral aide to encourage Sarah to make everyday use of the techniques she learns in therapy, and to provide support to her foster parents on unconditional care.
Sarah was removed from her biological parents at 18 months of age due to sexual and physical abuse. She and her sister were placed with a foster family who adopted them in 1995 when Sarah was almost 7. When she was 11, their adoptive parents separated, and Sarah was subjected to more abuse and neglect. Sarah was re-committed to DSS custody in October 2000 and placed in a foster home. After exhibiting threatening behaviors, she was hospitalized in December 2000 at the Boston Center of the Italian Home for Children; during Sarah's stay there, her adoptive mother abandoned her. Sarah had three foster home placements between April and October of 2001, and was hospitalized twice (8/01 and 10/01) at Providence Hospital due to self-destructive behaviors. In December 2001, Sarah was placed at the Key Behavioral Treatment Residence (BTR) in Pittsfield; she was transferred to Howard House, another Key program in Pittsfield, in August 2003.
At the Boston Center, Sarah was described as having a difficult time adjusting to her adoptive parents' divorce, but was motivated to work on her anger and behaviors so she could return to her adoptive mother. When her adoptive mother announced she did not want her in her life, Sarah became more depressed and agitated. The Boston Center's thorough discharge summary described special supervision for staff to avoid falling into Sarah's trap of behavior that would make her feel unlovable. Despite her desire for love, after all her losses, she could not get close to people: "She had scripted her life in such a way that she would continue to feel abandoned and victimized and she pulled everyone into the play she was directing."
In therapy at the Center, Sarah was helped to prepare for a move to a new foster home in 4/01. The Boston Center gave specific recommendations for continued "high quality" individual therapy to work on guilt, loss and ambivalence in relationships and support for her caregivers so they would not engage in power struggles with Sarah. Sadly, the Boston Center's recommendations were not followed and insufficient supports were provided to her and subsequent foster parents; thus, by the end of 2001, she ended up in a group home.
When Sarah first arrived in the winter of 2001 at the Key Program, the staff psychiatrist agreed with the diagnosis of PTSD and prescribed medication, but did not suggest a therapy program for Sarah to recover from trauma. Over the years, the Key treatment plans have been simplistic, and show little clinical sophistication regarding Sarah's needs, or about effective interventions for PTSD or depression.
Early in her stay at Key, when she was 13, a psychological evaluation by Kevin Tobin, Ph.D., described her as timid, depressed, anxious, having low self-esteem and prone to engage in self-defeating behavior: "She expects life to be distressing with few rewards and considerable anguish." Dr. Tobin said that Sarah became irritable and moody when she did not get the support and acceptance she needed. He recommended that she learn interpersonal skills and assertiveness and receive help "creat[ing] meaning in her life." Two years later, the same evaluator wrote a much more negative assessment of 15-year old Sarah, indicating she was headed toward a borderline personality disorder "which manifests as extreme emotional instability, impulsiveness and hostility. She fears abandonment although she often pushes others away ... [has] trouble adapting to change ... [and has] sudden mood shifts ...[and a] poor sense of identity."
Since she was 11, officials have documented that Sarah's academic abilities have been adversely affected by her unmet emotional needs. Her most recent education plan (6/03-6/04) states, "Sarah's reactive behaviors hamper progress as she is unable to focus on her schoolwork. She requires a great deal of external structure and clear instructions ... [and] extensive redirection and has great difficulty focusing on anything but her issues ... related to abandonment, loss and disappointment."
Sarah was not deemed eligible for services from the Department of Mental Health until 11/02; the determination qualified her for the Adolescent Support Program (ASP), a special Pittsfield public school. Christine Macros, the counselor at ASP, said that Sarah "has grown a lot: She is less self-destructive, socially more appropriate and can get it back together after her meltdowns." Ms. Macros said that if Sarah were placed in a foster home, she would require a lot of support and mental health services: "She craves the intimacy of a family, but she is residentialized." Ms. Macros also cited the negative impact of staff changes at Key, and said, " Because of her history, she really latches on to someone and gets wounded very easily with the high staff turnover at Key."
Sarah's diagnoses are depression, PTSD and reactive attachment disorder; her current medications are Wellbutrin and Depakote. Ms. Macros said that Sarah has not had enough "identity development work" or help with recovering from trauma. Asked what trauma treatment had been provided, she said, "We acknowledge she's had a lot of trauma." She said Brian Kelley, Sarah's previous counselor at Key, tried DBT, which helped with "self-regulation and emotion identification." Ms. Macros also expressed concern that Sarah may have an eating disorder that is not being properly addressed. Sarah had an endoscopy in 2002 and her gall bladder was removed this year, but she still experiences pain and nausea that cause weight loss.
Sarah has had difficulty working her way to a discharge level at Key. She admits her behavior worsens when other residents go home while she sees herself making no progress toward having a home. She has experienced physical restraints by staff as re-victimization, bringing back memories of abuse that increased her reactivity. In 11/03, Sarah wrote she wanted a Big Sister because, "I have no family and my peers go on visits except me and it kinda makes me sad." This past summer Sarah experienced a failed foster home placement that should have been prevented by a better match of the home to her needs, accompanied by intensive services to support her and the foster parent. The foster family included three children, including a youngster who Sarah said was very aggressive toward her, again triggering abuse memories. She tried to get help tolerating the youngster's behavior but, according to her, instead she was ejected from the home. Since returning to Key, she has bounced around in three agency programs (the shelter, the BTR, and Howard House) because the programs are considered full and there is not a space for her, and she was hospitalized. Ms. Macros commented, "It is frustrating to see her back in BTR where she started after so much work."
The Key program director indicated that they are looking for another foster home in Pittsfield so Sarah can continue at ASP, but there is no plan for intensive supports for Sarah or the prospective foster parents. Key intends to explain Sarah's problems to the foster parents, as they did this summer, and transfer her to a therapist in the community. Sarah fears another birthday and the holidays without a family. She says the only good things in her life are reading and working at the Animal Shelter.
Sarah is desperate for a foster home with no other children (except perhaps a baby) and a foster mother who is loving and does not yell. She asks tearfully, "Is it so hard to find a nice mother?" Sarah is open about how tormented she is by fears connected to past abuse including being yelled at, although she may not be aware of how much support a foster parent would require to avoid triggering her sensitivity to loss and to manage her behaviors. " I just want to be a normal kid with a family," she says.
DSS has failed Sarah. In the Foster Care Review in 4/02, when she was 13 years old, her goal of long-term substitute care was described as appropriate. National practice standards require permanency and DSS has made insufficient effort to help Sarah form new attachments since she was abandoned by her adoptive parents at age 11. As has been documented by national statistics, she is at high risk of failure in adulthood since she is turning 16 with no enduring relationships likely to continue when she leaves foster care. Not only has DSS failed to arrange permanency, the placement at Key has not met her needs. The Key program has ignored the Boston Center's thoughtful assessment that described what was necessary to avoid continued abandonment. I visited Key's Howard House in 2003 and 2004, and observed staff engaged in power struggles with residents, the same power struggles that the Boston Center warned would be harmful for Sarah. To place a child diagnosed with depression, PTSD and reactive attachment disorder in a large group home with inexperienced staff without trauma treatment was irresponsible. Group care triggers her behavior; what she has to learn to make an attachment should be supported with intensive services in a permanent home.
Because of the priority that must be placed on permanency for Sarah, short-term therapeutic placement should not be considered. She requires a placement with a skilled foster parent who receives intensive clinical supervision and in-home guidance and is trained in providing unconditional care and intends to adopt her or become her legal guardian. A foster family should be recruited specifically for Sarah, and receive ongoing intensive training and wraparound support. While Medicaid is not responsible for providing the foster home, without intensive home-based services, most foster homes would not be able to help Sarah risk forming an attachment. Sarah will not be successful, even if she continues in her current school placement, with only outpatient therapy or a few hours a week of outreach services.
Based on reading her record, and interviewing Sarah, Ms. Macros of ASP and Angela Bryan , the program director at Key, my opinion is that in 2003 and continuing to the present, Sarah's needs are as follows:
• To learn to separate her abuse and loss in the past from rejections and disappointments in the present;
• To learn ways to calm down when she gets upset, especially when she becomes fearful in situations that remind her of past abuse;
• To learn not to expect rejection and to behave so adults and peers will not reject her, including learning how to have a romantic relationship that supports and does not harm her;
• To learn new self-talk, especially to reduce her ambivalence about trusting others and getting hurt;
• To be in a challenging school program that leads to employment based on her strengths; and
• To have her gastrointestinal symptoms treated so she can eat normally.
This view of her needs echoes the Boston Center's assessment and treatment recommendations in 2001 and is similar to the perspective of Ms. Macros.
Sarah's caretakers, at home and in school, will have to be well trained in unconditional care for a traumatized child who is still reacting to repeated abuse and rejection. They will have to be prepared for a year or more of Sarah alternating between dependent neediness and untrusting avoidance of getting close. Her caretakers, at home and in school, will have to be taught how to enforce rules while avoiding power struggles with Sarah and preventing her setting day-to-day situations up so her behavior results in the rejection she fears. A skilled therapist working individually with Sarah and with her new family would teach her: (1) to separate her past trauma from the present and not blame herself for it; (2) self-calming techniques, especially desensitizing her fears; (3) how to recognize her efforts to get rejected and change them; and (4) how to use self-talk to improve her view of herself and her confidence that she is lovable. The therapist would guide her family in reinforcing her new learning and in endorsing Sarah's strengths even when she continues difficult behaviors. In addition, her therapist would provide clinical supervision to the therapeutic behavioral aide. The therapist would also develop a crisis plan with the family and aide and specify an on-call schedule for responding in crisis. Her therapeutic behavioral aide in the home working under the supervision of Sarah's therapist would: (1) remind Sarah to stay in the present; (2) encourage her use of self-calming techniques; (3) give her immediate feedback about how her behavior will get her rejected and what to do to avoid it; (4) encourage her to use positive self-talk to improve her view of herself; and (5) support her involvement in activity she enjoys, such as working with animals. In addition, her therapeutic behavioral aide would provide daily support to her foster parent on unconditional care, a focus on the positive, avoidance of power struggles, and withstanding Sarah's traps for getting rejected.
In my opinion, Sarah's needs could have been and should now be met with intensive home based services in a pre-adoptive foster home including:
• 1-on-1 behavioral services in the home (daily, including weekends);
• Individual therapy, family therapy and in-home behavior management guidance for her foster family;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, foster family involvement, and school coordination and a crisis plan, guided by strong clinical supervision.
RAYMOND B.
Ray (DOB 9/24/92) is a 12-year-old tragedy. He has severe communication and sensory integration disorders that no one seems to understand. His mother is unable to work outside the home because of Ray's aggression in school and with babysitters. Due to financial hardship, she was forced to move with Ray and his younger sister from a trailer to their current residence, a small, cluttered apartment. Now she fears they will become homeless because of her lack of income. Ray has superior nonverbal abilities and could be much higher functioning but is heavily medicated so he does not explode. His life consists of attending school, building complicated Legos structures, playing video games and attending his sister's Girl Scout meetings. Ray has no friends.
Ray has had some community-based services, but they have been terminated for arbitrary reasons that have nothing to do with Raymond's needs, and they have not prevented hospitalization. Ray needs a comprehensive assessment to explain his difficulty in engaging in reciprocal interaction and his reactivity to tactile and auditory stimulation and teasing. This assessment should weigh the benefits of integrating techniques effective with autism spectrum children, expressive and receptive language disordered children, and children with sensory integration problems into his treatment, and build on his nonverbal abilities. Based on this assessment, a treatment plan should be designed that provides a combination of daily home-based interventions by a behavior specialist, sensory integration specialist, and social skills coach, as well as guidance for his mother and school personnel for as long as necessary.
His mother reports that as a young child, Ray had delayed speech, was a loner, did not sleep or eat much, and was easily agitated. His grandmother died when he was 6, and at age 7, his parents separated in part due to his father's alcoholism. A speech and language evaluation (7/98) found Ray, at age 5, had language skills that were almost two years delayed. He was described as having borderline intelligence with significant deficits in attention, auditory recall and auditory processing. Recommendations included speech therapy three times a week for 30 minutes to improve receptive and expressive language skills and intelligibility of connected speech, and guidance to help his teacher simplify instructions to improve his comprehension. He repeated kindergarten and began special education services in 1996. Ray had his first neuropsychological evaluation at Baystate (6/00) when he was 7 because he was failing in school and exhibiting bizarre behavior, such as urine and feces incontinence and unexplained crying spells. He also was not playing with peers. The evaluator found that Ray had significant neurocognitive abilities in the superior range of functioning which "should be capitalized on immediately to offset any further deterioration," and concluded that he met the criteria for a linguistic learning disability, attention/concentration problem and learning disability in math and spelling.
By the time he had a neuropsychological re-evaluation in March 2003, Raymond had been diagnosed with ADHD and ADD and undergone trials of many medications, including Ritalin, Seroquel, Risperdal, Tenex, Adderall and Clonidine. He was described as still out of control, but a child who loved school where his behavior seemed better than at home. The evaluator said the results of Ray's IQ tests were atypical because his superior nonverbal processing scores were 40 points higher than his verbal skills. At age 10, he was performing at the late second and early third grade level. The evaluator concluded that Ray "requires a very highly structured, routinized learning environment with very clear and concrete expectations and continual opportunities for repetition of information which he doesn't easily retain."
An assessment (1/02) initiated by the Department of Mental Health through the Collaborative Assessment Program (CAP) indicated that Ray was at risk of out-of-home placement because he might hurt his mother or sister (his mother had filed a CHINS in 10/01 and the case was diverted to CAP). His mother said that he could not accept that his parents were not getting back together. The assessment reported that in addition to medication management, and individual and family counseling services through Brightside Inc., Raymond, his mother and his sister had received Family Stabilization Services from October to December 2001. Ray had also been seen several times for crisis intervention at the Mt. Tom Mental Health Clinic, and subsequently, Ray began participating in a DMH therapeutic after-school activity group.
Linda LaFontaine, a therapist at Brightside who has seen Ray since March 2001, said he has a learning disability, and is unable to express himself or decipher body language or facial expressions in others. Ms. LaFontaine said that Ray has a difficult time with loss, and cited his grandmother's death, his father's departure, the move from the trailer and the resultant loss of his dog. Ms. LaFontaine does not believe that Ray meets the criteria for an autism spectrum disorder, despite his communication, social, and sensory processing problems. She agreed he might have a sensory integration problem for which he has not had an assessment or treatment.
Ms. LaFontaine said that over time, Ray's aggressiveness has decreased, he behaves better at school, and his mother is more consistent, but nonetheless, he can be stubborn at home and sometimes his mother gets overwhelmed. Ms. LaFontaine tries to help his mother establish a regular routine and to avoid power struggles with Ray. She reports that his mother appreciates being able to call her. Ms. LaFontaine said Ray plays Uno with her, but often will not talk to her. His mother said that Ms. LaFontaine does not know "what to do about whatever is wrong with him." According to Ray's mother, he will not talk to anyone about his outbursts. He seems unable to describe his feelings, although every night at dinner she tries to get him to talk. His mother poignantly asked me, "Is there a therapy for him to learn to express himself?"
His mother is pleased that Raymond just started a learning disabilities program in middle school with six children in his classroom. She wants to meet with school officials to implement the modified behavior plan spelled out in last year's individualized education plan (IEP), which she thought was effective, but as of mid-September, the meeting had not occurred. His mother thinks that learning to have friends should be part of Ray's IEP and his DMH treatment. She said DMH helped get him on the special needs bus, which is important because other children pick on him so much. According to his mother, Ray's best service is the River Valley Counseling Center (RVCC) group that meets after school on Fridays, but this is his last month in the program because they have a waitlist and have to admit other children. Although Ms. LaFontaine was unaware of it, Raymond is about to be terminated from a service that he needs, enjoys and from which he has benefited. His mother says Ray has no other friends and that he cried when he heard he had to stop seeing the staff person from the RVCC program. This led him to recalling his grandmother's death several years ago. His mother said DMH recommended the Boys and Girls Club, but she said he has difficulty participating in recreation with other children. She said he previously enjoyed a special baseball program at Sunshine Village, but now the teams travel to games, and she does not have reliable transportation. Ray's fun activities include walks to the park with his mother and sister, trips to the Holyoke carousel, and watching videos at home. His mother does not know what he likes about going to his sister's girl scout meetings, where he hands things out and mops the floor. In the summer, he enjoys an annual camping and fishing trip with his mother, sister and uncle. His mother, formerly an employee at a brokerage firm, says her life now consists of leading her daughter's scout troop, going to church, taking Ray to appointments and picking him up at school after incidents.
Ray's DMH case manager visits the home once a month. The family had FST twice: once for three months, and once for about six months. The service ended in January 2004. FST workers tried to teach Ray how to express his anger and talk about his grandmother's death. They taught him to shred paper and to punch pillows when he is angry, instead of being aggressive. His mother reminds Ray of these outlets whenever he gets angry. She said the FST worker was wonderful, but noted she really needed his help on weekends, and he came once or twice during the week. Ray's mother said that she does not want him to be hospitalized because he does not understand why he is there and he cannot adjust to being away from her. She said that the local mental health clinic had worked out a crisis plan with her for Ray, but the last time she tried to call for assistance, Ray pulled the phone out of the wall. He also refuses to go away from her for weekend respite.
His mother has a limited understanding of Ray's problems. She said a doctor at Providence Hospital told her his brain was "like mush, with parts of it not connected to other parts." When he has an " off day," she assumes something is amiss in his brain because she cannot connect his behavior with anything at home. He currently is taking Depakote, Clonapin, Wellbutrin, Adderall and Abilify, which appear to be helping, as he has not had any outbursts on this combination of medications. His mother wishes the school or DMH would initiate a consultation to review Ray's behavioral triggers. She says when someone at school pushes him or touches him (even inadvertently) or calls him a name, he responds by pushing or biting. When adults try to calm him, he throws whatever he can reach, sometimes taking off his shoes and tossing them.
During my visit at the family home, his mother asked Ray to leave the TV and come to talk with me. He said hello, but he did not want to talk.
Raymond has the capacity to be much higher functioning, even with a small increase in social skills, improved reciprocal communication, and a better understanding of verbal and unspoken messages from others. Ray has some superior nonverbal abilities that could be enhanced with more services. But the professionals in his life do not know why he reacts to being pushed or teased and whether it reflects a sensory processing problem. Nor do they know if, instead of being oppositional, his "no" might be indicative of extreme frustration, over-stimulation, poor comprehension, cognitive inflexibility, and/or having no other way to express himself. Tragically, these professionals are not trying to figure out what is behind Ray's behavior. Ray needs a comprehensive assessment by an expert knowledgeable about children with expressive and receptive language disorders, sensory integration problems, impaired social interaction, difficulty processing complex concepts, traumatized by loss of significant adults, and nonverbal talent.
Based on reading his record, interviewing his mother and observing Raymond and his sister at their home, and interviewing his therapist Linda LaFontaine, my opinion is that in 2003 and continuing to the present Raymond is at risk of out of home placement and has the following needs:
• To have a friend and learn the give and take of conversation and reading nonverbal cues;
• To learn how to tell a simple story at the dinner table or report something that happened during his day to his mother and sister;
• To have his superior nonverbal abilities celebrated at school and be used in activities in addition to playing video games or Legos;
• To change his appearance to look more normal (haircut, style of walking, clothes) so he is not such a target for teasing;
• To learn what is so upsetting to him about being touched or pushed and learn new self-talk and non-aggressive self-protective actions to reduce his reactivity;
• To learn negotiation instead of over-reacting to not getting his way; and
• To talk about the loss of his grandmother and his father's move.
This view of his needs is consistent with the perspective of Linda LaFontaine and the evaluators at Baystate. Once he has a comprehensive assessment, a complete behavior intervention will have to be designed for Ray that specifically addresses and works to improve his expressive and receptive language, sensory integration, reciprocal interaction, processing problems and grieving and that builds on his superior nonverbal abilities. This should include a plan for individual services in the home and community every day, coordination of these services with his school, guidance for his mother, and a crisis plan. A behavior specialist in the home should work on the following areas: (1) to help Ray normalize his appearance; (2) to coach Ray in the give and take of friendship, perhaps beginning with his sister; (3) to coach him in telling a simple story or reporting what happened; (4) to find activities to get him positive attention for his superior nonverbal abilities; (5) to teach him how to reduce and cope with his anxiety; and (6) to teach him positive ways to work it out when he does not get his way. The coach could also provide supervision every day he has no after-school activities until his mother returns from a day job. In addition, the coach would provide daily support to his mother on how to support Ray's progress and how to avoid power struggles with him. Ms. LaFontaine agreed, "1:1 services most definitely would benefit Ray. I wouldn't know how to arrange this service. Mike [the activity group leader] is the closest thing he has had." She worries about his explosions in the future, and added, "Removal from home would be a disaster for him."
In my opinion, Ray's needs could have been and should now be met with intensive home-based services including:
• A comprehensive, integrated assessment;
• 1-on-1 behavioral services in the home (daily, including weekends);
• Individual therapy, family therapy and in-home behavior management guidance for his mother;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, school coordination and a crisis plan, guided by strong clinical supervision.
ROSIE D.
Rosie D. is a friendly 16-year-old (DOB 9/18/88) who is delayed but wants to be like other kids. Although there are times when she is anxious, irritable and aggressive, during my visit, Rosie chatted about school and her weekend activities, and competently served coffee and dessert. Rosie has had to adjust to a new home following her parents' separation a year ago after she revealed that her father had fondled her.
Her mother articulates a clear description of the complex overlay of a "brain dysfunction" with triggers from trauma and a learning disability that drive Rosie's behavior. Rosie's mother is firm and loving, but in her dedication she has been criticized as becoming over-protective. This dynamic may have increased with her guilt and anger about her ex-husband's behavior and the turmoil caused by their difficult divorce. A recent evaluator believes Rosie is deteriorating dangerously because of the challenges of adolescence and recommended residential placement. Rosie's long-time therapist, Robert Boylston, thinks residential placement would be harmful for Rosie. Given her mother's statements that she is unable to continue to care for Rosie with currently inadequate supports, he recommends that Rosie enter a specialized foster home during the week and return home on the weekends. In addition, Mr. Boylston believes Rosie and her mother need more help breaking out of the pattern where they respond to each other in ways that cause escalation.
In my opinion, Rosie and her mother would get more benefit from intensive home-based services, including a highly trained behavior specialist in the home every day after school until bedtime and on weekends to provide direction to Rosie, and offer support while demonstrating effective strategies to her mother. The specialist would team with Mr. Boylston in therapeutic sessions to assist Rosie and her mother move beyond their current dynamic and re-establish a loving and mutually respectful relationship as Rosie enters adulthood.
Rosie was severely sexually and physically abused before being removed at age 3 from her birth parents. She was in numerous foster homes before being placed, at age 5, with her adoptive parents. Rosie had placements at Three Rivers (1995-6), Children's Study Home, and Northampton Center for Children and Families (1997-1999). Her diagnoses are PTSD, Oppositional Defiant Disorder, ADHD, Bipolar Disorder, and Developmental Reading Disorder. She lived at home from ages 11-13, except for three one-week admissions to the Crisis Stabilization Unit (CSU) and two weeks at Four Winds, an in-patient facility. In May 2001, Rosie was placed in Key’s Children's Home and remained there until July 2002.
At age 7, Rosie had a neuropsychological evaluation that identified and explained her dyslexia, the impact of her short attention span, and proposed useful teaching methods. When she was 8, the thorough discharge summary from Three Rivers concluded: "She is only able to control herself with the active external support of firm and neutral limit-setting. This limit-setting must be combined with a nurturing explanation for the correction that demonstrates to Rosie that the intervention is not an arbitrary abuse of power by the caretaker. Without this reasoned explanation, Rosie tends to experience a loss of faith in her caretaker and experiences the intervention as assaultive and in kind with past abuse she has suffered. She then resists with all her might. Rosie is highly motivated to improve her self-control and struggles greatly to maintain her faith in her caretakers at these times. Trust is a very large issue for Rosie." The discharge summary indicated that "despite severe behavioral disturbances, DSS denied that Rosie had any...need for support services."
In 2003, Rosie's case manager, Alba Passerini, acknowledged that for years, Rosie's mother had arranged most of the services for Rosie, including a fulltime 1:1 in school, tutoring, KidsPlace, a sexually-abused girls group, and monthly interagency team meetings. Years earlier Rosie's mother found a private therapist, Mr. Boylston, who has continued to work with Rosie. Her mother said that an in-home support person who could have replaced her when she was not there and co-parented with her father, would have avoided placement at Key in 2001 and could have prevented sexual behavior. Her mother said that all but one of the 1:1 staff in the past was too inexperienced and untrained: "They did not understand triggers, flashbacks, mood swings and retrieval problems." Understanding how her mother successfully manages Rosie and at the same time being able to expand both parents' effectiveness would require a skilled and clinically supervised person.
Rosie is supposed to spend two weekends a month in a respite home (paid by DMH on contract), which her mother arranged with Rosie’s former foster mother who manages her well. However, the former foster mother is overloaded and only has Rosie once a month. Her mother doubts any other respite provider "could handle a full blown episode if they told Rosie 'no.'" Rosie knows that she gets sent to Key for the weekend if she is "unsafe" by trying to harm others or herself.
In early 2004 Rosie spent five weeks at Key shelter. A 2/04 psychological evaluation by Dr. Heather Hornik, a psychologist who had seen Rosie three times since age 5, indicated that Rosie seemed to be decompensating, was under intense stress, had to go to an emergency room because of suicidal talk and threats to run away when her mother set limits. "At her best, she is friendly, related and eager to learn...[but] she is anxious and unhappy." The evaluator indicated that the pressure of adolescence was reawakening trauma and a resurgence of PTSD symptoms was likely, with a deepening of her despair and an escalation of her behavior. “She is very slow to perceive and process visual/nonverbal information ... when she is under stress and inattentive, Rosie does not easily read the nonverbal signs of communication that would help her anticipate and avoid trouble (e.g., tone and volume of voice, facial expression) ... she has to spend [a lot of] her cognitive and emotional energy on self-control ... [given] her edgy wariness that others will insult her." The evaluator recommended placement in a specialized residential school with a rational, non-punitive behavior system such as DBT. The evaluator wrote in great detail about the urgency of helping Rosie improve her reading and provided specific instructional methods, as well as approaches that would assist her in getting through the obstacles that impede her progress in math and writing.
In 2003, her therapist, Mr. Boylston, said that Rosie should have a combination of about 10 hours a week of 1:1 support outside of school plus effective respite; he could arrange the 1:1 through a clinic where he worked, but he said Medicaid would not pay for it for Rosie. He succeeded in securing authorization for only 36 hours of therapy every six months (he said the Massachusetts Behavioral Health Partnership took away and then reinstated four hours of consults per quarter). In my interview with him this year, Mr. Boylston focused on the relationship between Rosie and her mother: "They are stuck in an unproductive pattern of reacting to each other that Rosie cannot break out of, and she does not let her mother disengage." He believes that Rosie was a very disturbed young child who has made great progress, but in the process her mother unintentionally engulfed her. He said Rosie has a better relationship with her mother when she is not living at home and that she does not feel abandoned because she comes home on weekends. Mr. Boylston thinks residential placement would be harmful and recommends a therapeutic foster home in Pittsfield so she and her mother can continue in therapy and have weekends together at home. The foster parent would have to be well trained not to take Rosie's words and behavior personally, not to be intimidated, to set limits (but do it quietly), to be patient and not try to force her. Mr. Boylston pointed out that Rosie’s outreach worker is in the home with Rosie 15 hours a week. "I don't know of anyone other than Rosie who is getting that much and that's what I want to keep in place,” Mr. Boylston said. “There is no other intervention available other than moving someone in the home. That would be ideal and less costly than therapeutic foster care, but I have no idea who could make that happen.”
Rosie talked happily about being a counselor-in-training this summer. She swam every day, went to Girl Scout camp and went horseback riding. Rosie likes her outreach worker from the Brien Center who takes her swimming, to see horses, and to visit her father. To avoid placement at the crisis unit, Rosie said, "I'd like Mom to talk to me calmly, to rock me like she used to do, but she pushes me away."
Rosie's mother said the antipsychotic Abilify works the best for Rosie (Risperdal made her feel dopey, and she had a big episode on Geodon.) But two months ago, Rosie started becoming more physically aggressive. Her mother is upset she had to lock up the knives at home. She is angry with the crisis team: "It's totally broken. They don't follow the crisis plan. I told them they had to use the CSU." She continued, "Tracking has done some good things, but Rosie needs someone to teach her the skills to calm herself down. She needs a therapeutic day program, but the closest one is in Northampton. This year she's dealing with adoption, in part because her biological sister is riding on her bus, unfortunately. I have been trying to pull back so she can grow." Although Mr. Boylston suggested therapeutic foster care, Rosie's mother said she felt pressured when the DMH case manager brought papers to her home to sign giving permission for foster care. "I feel very bad about it, but it's the lesser of two evils,” she said. “I have seen a negative personality change in Rosie. My friends are afraid she will hurt me. Every time we try something and it doesn't work, it takes a long time to get something else. At age 16 we're running out of time.”
Based on reading her record, interviewing Rosie and her mother at their home, and her therapist Bob Boylston in 2003 and 2004, my opinion is that in 2003 and continuing to the present, Rosie is at risk of restrictive placement and has the following needs:
• To have firm and neutral limit-setting with a nurturing explanation for the correction that demonstrates to her that it is not an arbitrary abuse of power;
• To anticipate that something will trigger her and learn to solve problems without threatening to run away or hurt herself;
• To separate her past abuse from the present, not to feel she is to blame for what happened to her, and learn what she can do to reduce flashbacks and ask for help when they happen;
• To improve her processing of visual/nonverbal information such as facial expression and tone and volume of voice, especially when she is under stress so she can anticipate and avoid trouble;
• To learn ways of responding to others that reduce teasing from them and use self-talk to tolerate it so she does not have to expend so much emotional energy on self-control;
• To learn how to avoid the unproductive pattern of reacting to each other that she and her mother seem stuck in; and
• To have special instruction so her reading improves and is less frustrating.
This view of her needs is similar to that of her therapist and past evaluators.
Although preferable to group care, the odds of finding a skilled foster parent for Rosie are low and the cost of training and providing daily support for the foster parent would be high. Recruiting, training and providing clinical supervision for a behavior specialist (not a person who just accompanies Rosie on activities) to be in her home daily after school until bedtime and on the weekends, with the active support of her therapist in helping Rosie and her mother get out of their reactive relationship with each other appears to be more likely to meet Rosie's needs.
In my opinion, Rosie's needs could have been and should now be met with intensive home based services including:
• 1-on-1 behavioral services in the home (daily, including weekends);
• Individual therapy, family therapy and in-home behavior management guidance for her parents;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, and school coordination and a crisis plan, guided by strong clinical supervision.
JOSHUA D.
Joshua D. is a talkative, obese 15-year-old (DOB 3/20/89) who appears more depressed this year than when I saw him in 2003. He had an unsuccessful semester last year at Franklin Academy, a new residential school for teenagers with nonverbal learning disorder (NVLD) in Connecticut (for which his parents have not been reimbursed). This fall he started at a local new magnet school, and has a therapist who is optimistic about his treatment.
Josh has had several evaluations that have described a combination of learning and social problems, depression and anxiety. A psychoeducation evaluation in 2001, when Josh was 12, concluded that he was more depressed than had been recognized, had an anxiety disorder, a nonverbal learning disorder and exhibited many of the characteristics of Asperger’s Syndrome (isolation and social deficits).
Although a lot of time has been lost in getting Josh the proper treatment, intensive in-home intervention at this point, as more fully described below, is likely to determine whether he will be a success story like other young adults with Asperger’s Syndrome or NLVD who are engaged in productive lives.
Josh's adoptive mother was working as a visiting nurse when she met him as an infant; both his parents were mentally ill and his grandmother was unable to raise him. Josh’s adoptive mother and her husband decided to adopt him after he was removed from his birth parents’ home. He was prenatally exposed to his mother's medication and had significant developmental delays. At age 3 he was described as having poor attention and had difficulty following directions. A year later he was assessed because he was not playing with other children in daycare; he was diagnosed with ADHD, a developmental coordination disorder, and a mixed receptive language disorder. He had a neurodevelopmental evaluation at age 5 and was described as delayed, with autistic-like features and clumsiness. In second grade (1996), an educational assessment characterized Josh as "very complex with many behaviors interacting" and gave an itemized list of his difficulties; he was to be placed in a small inclusion kindergarten where the teacher was expected to follow pages of guidance in the report, particularly regarding his social development. On another administration of an IQ test, he had a verbal score of 90 but a performance score in the borderline to mildly disabled range.
He was treated with Ritalin at age 7 with no benefit. At age 8 his weight was interfering with gross motor skills. An 18-page psychological assessment when he was 10 spelled out the characteristics of NVLD (delayed language, impaired reciprocal social interaction, and circumscribed interests) and the aggressive steps that should be taken to enhance his social skill development. The evaluator indicated that Joshua did not have ADHD, but rather, his anxiety and other emotional problems interfered with attention, and that while he had social skills deficits, unlike children with Asperger’s Syndrome, he had reading, spelling, writing and math disabilities which the evaluator described in detail (his reading comprehension was at the first grade level, but he was in a fifth grade inclusion class). In addition, the evaluator presented a specific behavior plan to help Josh exercise greater self-control and improve his comprehension of instructions. It is unknown whether the school implemented any of these thoughtful suggestions. An evaluation in 2001 concluded he had the adaptive functioning of a 5-year old and recommended treatment for nonverbal learning disorder, dysthymic disorder, and anxiety disorder. Although his mother characterized his residential placement at Lakeview (10/00-4/01) as “a disaster,” while he was there he had an excellent neuropsychological evaluation offering detailed recommendations about what to do about his NVLD academically, improving peer relationships and reducing anxiety. He was described in the Lakeview discharge summary as being “a sensitive boy...[with] exceptional verbal ability...who would thrive in the right educational setting.”
The 2001 psychoeducation evaluation mentioned above that concluded that Josh, then 12, was more depressed than had been recognized (with agitated moodiness), also found that his verbal skills significantly exceeded his borderline nonverbal functions. He was in the low average range on reading comprehension and the borderline deficient range in math. His fine motor problems made it difficult for him to write and he had disabilities in spelling and written expression. He made frequent errors in judgment and decision-making due to internal preoccupation and narrowing the information he took in, precluding an accurate assessment of the entire situation presented.
The lack of mental health services that would fit Josh, who desperately wants to function normally, was reflected in the evaluator's recommendation that he be referred to the Department of Mental Retardation or United Cerebral Palsy that had respite and social outings for children with pervasive developmental issues. In 1/02 Josh was observed all day in seventh grade after he moved from the residential program at Lakeview to the public middle school. The evaluator was critical of his public school program, with the exception of the special education teacher, who worked well with Josh in a few classes. In addition, the evaluator gave very specific recommendations about how to design services for a NVLD student, how to enhance his social skills, how to reduce his dependence on his 1:1 aide, and how to increase his involvement in the classes where he was mainstreamed.
Josh had three significant traumas in elementary school. A neighbor sexually abused him, but Josh did not disclose the abuse for a long time. The teenaged neighbor was not prosecuted and still lives across the street from Josh – which still terrifies him. Second, Josh described being teased by teachers and classmates, called a “fat ass, four-eyed retard,” resulting in it being “impossible for school to be a place of learning,” and his subsequent decision to stay home alone rather than go to summer camp. Third, he has been troubled by fears that he has inherited mental illness from his biological parents.
His IEP (12/02-3/04) stated:
“Joshua requires consistency and forewarning of any changes in routine. He needs ... a 'stress free' environment in school ... This includes not being made fun of by others ... Josh needs trained people in his environment who detect early signs of stress who have the ability to address his concerns and refocus him ... Josh wants to be successful in attaining friendships and in his academic performance. He wants to lose weight ... work with animals ... be in an art program, the theater or drama group.”
In 2003 I interviewed his counselor, whom Josh said he could not trust; she had not given much thought to Josh's unique needs and what it would take to meet them. The counselor did not think Josh would get any help his mother does not approve, and she doubted that Josh could improve if he continued to live at home. She said he would have been able to get help with social skills at an after-school program called South 40, but his mother did not want him to be with "mentally ill" children served by the Department of Mental Health because she saw him as having a learning disorder. His 2000 treatment plan at the local Mental Health & Substance Abuse program was simplistic. For social skills it only offered attending the after-school program and engaging in activities with peers. Under “manage feelings,” the plan proposed that Josh talk to staff when beginning to escalate; the plan also suggested that he exercise three times a week. The counselor said the after-school 1:1 staff person in her agency was available several hours a week; she said it worked well when Josh took his swimsuit to school and the 1:1 picked him up at school and took him swimming. Josh, however, called the 1:1 a "paid jerk" who told him he was fat; his mother said the staff person was only available one hour a week that was convenient for the family.
In 2003, I talked by phone with Dan Collyer of the city’s special education department, who said the Northampton Center for Children and Families (NCCF) had agreed to take Josh into its program. He said Josh does not fit into one diagnosis neatly, but his primary diagnosis of depression could be treated at NCCF. Last year Josh’s mother discounted NCCF as inappropriate for him, but this year says she said she would visit NCCF and consider it if the magnet school does not work out.
Josh is now working with a therapist, Anthony Siracusa, who his mother arranged and pays for as a private client. Dr. Siracusa is knowledgeable and committed to Josh. He is working on helping Josh develop social skills and on improving family relationships. He said Josh's mother loves him, but is harsh when talking to him and Josh, in turn, can sound verbally abusive with peers and family members. He indicated that Josh's adult sister helps Josh a lot and is able to give him direct, loving feedback. Dr. Siracusa is optimistic about Josh's new magnet school, which focuses on technology. He said he and his partners consult to all the schools in the area, but do not yet have such an arrangement with the new school. Dr. Siracusa said he would be willing to consult with school staff about Josh, but pointed out that either the school or the family would have to pay for his time. He said he wishes he had a small group of teens with similar problems to meet together to improve social skills. When I proposed a graphics tutor to encourage Josh's interest in designing movies and videogames, Dr. Siracusa was enthusiastic. He agreed that school and therapy are not enough assistance for Josh and that cases like his require much more “collateral contacts” and teamwork than he is paid for. He thinks a 1:1 to help Josh develop an interest and to improve social skills is needed and should be paid for.
Based on reading his record, interviewing Josh and his parents at their home, and interviewing his therapist, my opinion is that in 2003 and continuing to the present, Josh is at risk of restrictive placement and has the following needs:
• To be able to state the reciprocal social interaction skills he wants to improve, including his ability to stand in others' shoes, so that he is liked better by peers and becomes less isolated;
• To learn an effective response so his feelings are not hurt and he does not become moody if peers or adults tease him or discriminate against him because of his weight or his differentness;
• To be helped to anticipate change so he is less anxious, less irritable and more able to be attentive and comprehend instructions;
• To learn how to take in the total picture of a situation, without being preoccupied with himself, so he can improve decision-making based on all the information;
• To be challenged in school because he has an excellent memory, is artistic, interested in graphics and theater, and can go to college;
• To learn optimistic self-talk that challenges his negative script for himself including his fears that he has inherited mental illness; and
• Not to blame himself for his sexual abuse, feel like damaged goods, or believe that his sexual preference is dictated by his abuse and to learn strategies for coping with his fears of encountering the perpetrator.
These needs have been well-documented since he was a young child in assessment after assessment, but the primary agency expected to implement the recommendations – the school system or the mental health system – did not do so. This view of Josh's needs appears to be shared by his therapist.
A 1:1 coach in the home working under the supervision of Josh's therapist would: (1) help him implement what he is learning to improve his social skills, including involvement in positive activities with peers; (2) tutor him in graphics on his computer and assist him in making a video that would be used in a school activity; (3) rehearse with him how to respond to teasing; (4) help him use positive self-talk to reduce depression; (5) implement anxiety-reducing strategies; (6) implement better decision-making by not narrowing the information he digests; and (7) if he wants to lose weight, to get him involved in an effective exercise, diet and support group for doing so. In addition, the coach would offer guidance to his parents to increase their recognition of what Josh does well and to reduce harsh criticism. The coach could play an important role in guiding school staff in providing similar supports to Josh.
His therapist working with Josh and with his family would improve their support for Josh and assist Josh with new self-talk, forming positive relationships, improved judgment, and decision-making about his goals. His therapist would provide clinical supervision to the 1:1 coach. His therapist would consult to the school, especially in developing a “differentness” acceptance approach to reduce teasing. His therapist could also play an essential role of helping his family and school understand Josh's unique combination of problems so they are working together to meet the needs underlying his behaviors.
In my opinion, Josh's needs could have been and should now be met with intensive home based services including:
• 1-on-1 behavioral services in the home (several days a week, including weekends);
• Individual therapy, family therapy and in-home behavior management guidance for his parents;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, and school coordination and a crisis plan, guided by strong clinical supervision.
DEVIN E.
Devin, a warm, lively 11-year-old boy (DOB 5/21/93) who lives with his grandmother, is a demonstration of the effectiveness of home-based services. Since my visit to their home a year ago, Devin is higher functioning, his new school is collaborating with his in-home behavior specialist, his grandmother no longer feels overwhelmed, the safety worries about Devin, other children and adults are being managed, and he does not seem at imminent risk of restrictive placement. These improvements appear to be the result of his psychiatrist once again recommending intensive home-based services – a recommendation which finally was partially responded to by the Massachusetts Behavioral Health Partnership. Devin’s psychiatrist found that an array of home-based services was medically necessary, and a newly assigned behavior therapist carefully designed a plan that included approximately 15 hours of face to face services, plus additional time for training, supervision, support, collateral contacts, travel and administrative tasks. Unfortunately, most of these services were not begun until almost seven months after they were recommended. Only some of the services, at less than the recommended intensity, are being provided. Yet these limited home-based services are making a difference for Devin.
Devin was probably prenatally substance exposed and was neglected and abused in his mother's care until his grandmother took him as a toddler. He had a significant language delay and was easily frustrated and aggressive. School and mental health staff considered Devin retarded and autistic. He has had many diagnoses and numerous medication trials, with little agreement about his needs or the services that could meet them.
A thorough evaluation of Devin before he was 7 by the Children's Hospital Developmental Medicine Center (3/00) gave explicit prescriptions for mental health, family support, educational and language services that were ignored for more than three years. The evaluation specifically recommended home-based services. The Developmental Medicine Center's evaluation indicated that Devin was not autistic, but had global developmental delay and post-traumatic stress disorder. Nonetheless, school and mental health staff continued to operate as if his developmental delays could not be treated; also, no trauma treatment was provided. His grandmother continued to be criticized for failing to cooperate with a picture method of enhancing Devin's communication that has been successful with autistic children because she knew he could speak and thought everyone working with him should help him increase his words. In 2003, I interviewed a counselor assigned to Devin's family. She was very poorly informed about Devin and his needs, and stated she was only involved because, in order to have access to a psychiatrist for medication, Devin was required to have a counselor. She believed Devin was autistic and was likely to hurt someone at which point he would be removed from his home.
When I met him in 2003, Devin urgently needed a thorough oral-motor speech and language evaluation to assess the causes of his articulation difficulties. He not only had a large sight vocabulary and good comprehension of what was said to him, he also knew many words. However, he was extremely difficult to understand because his tongue, palate, and teeth impaired his articulation of words he knew and used correctly.
A lengthy consultant report in 2000 preparing for the next school year gave specific direction for designing a consistent, reinforcing, not over-stimulating behavior and communication program. That report, like the Children’s Hospital evaluation, recommended home-based services and behavioral training. A speech pathologist evaluated Devin in 2001 and diagnosed developmental verbal apraxia of speech, commenting he "knows what he wants to say, attempts to say it, but has difficulty with the motor planning process required to help him produce his utterances."
"Guidelines for Working with Devin," apparently written in July 2001 for respite staff, emphasized helping him with transitions, praising him, being firm in limit-setting, and avoiding use of the word "no" to which Devin reacts. In 2001 Devin spent four months at Hillcrest Intensive Treatment Center and in 2002 his grandmother was encouraged to allow him to be placed at the New England Center for Autism – a move she opposed. By 2003, the school's problems in providing appropriate services for him resulted in his being the only student in a room with an aide all day, every day, and very limited school-based speech services.
In 10/03, Dr. Matthew Friedman, a psychiatrist at the Massachusetts Society for the Prevention of Cruelty to Children, sent a letter to the Partnership stating, once again, that intensive home-based services were medically necessary for Devin. The services he recommended included: (1) a trained behavior specialist to work directly with Devin in the home 15 hours a week to implement behavior and speech-language services and to provide family and school guidance for consistent support and structure across all settings; (2) a psychiatrist to prescribe medication; (3) a clinical team including a therapist to work with Devin to recover from trauma and to provide clinical guidance to the behavior specialist and others working with Devin, his grandmother and school; and (4) effective crisis intervention.
Subsequently, Efrat David, an MSPCC clinician who is an expert in developmental delays and autism spectrum disorders, developed a thorough behavioral intervention for Devin. This plan detailed the specific contributors to his aggression, violation of personal boundaries, difficulty following directions, language delays, and limited peer relationships. She proposed a combination of daily home-based specialized intervention (for which she designed a detailed approach) that included 15 hours a week spent directly with Devin and additional time for administrative functions. She also recommended occupational therapy with a specialist in sensory integration dysfunction and auditory integration training, speech therapy in school with articulation and conversation exercises daily at home, weekly consultation with school staff and his grandmother, and orthodontic and ENT treatment. Ms. David’s supervisor, Gail Bass indicated in a subsequent deposition that the administrative functions, which included travel, training, supervision, paperwork and collateral contacts, totaled 10 hours a week. Ms. Bass testified that Devin only is provided 8-10 hours of face-to-face interventions per week, and that much of this is really case management and family support, not behavior training for Devin. Ms. Bass further acknowledged that these limited services had not been available at this level until May 2004.
Based on reading his record and interviewing Devin and his grandmother at their home, my opinion is that in 2003 and continuing to the present, Devin has the following needs:
• To reduce his reactivity and increase his ability to regulate his emotions which contribute to his aggression;
• To become more aware of and respect personal boundaries and learn acceptable ways to satisfy his craving for tactile stimulation;
• To be helped to avoid getting over-stimulated which contributes to his getting out of control;
• To improve in reading nonverbal cues, understanding the perspective of others, synchronizing with others, sustaining conversations and learning the rules of games;
• To improve planning, sequencing and managing time and space;
• To modulate the speed of his speech and articulate words more clearly; and
• To learn to think before acting, especially when he is anxious.
This view of his needs is reflected in the written intervention plans by the behavior specialist and the letter from the MSPCC psychiatrist and is consistent with the Children's Hospital assessment. In their quiet new home in a neighborhood where Devin can safely ride his bike alone, the behavior specialist helped his grandmother convert a room for Devin's learning space. He has a structured schedule posted on the wall and the equipment the behavior specialist uses to teach relaxation techniques, collaborative games, social stories, sensory diet, reading cues, de-escalation techniques and conversational skills plus therapy for PTSD. The behavior specialist proposed an intensive home-based program of two hours a day in addition to guidance for his grandmother and the school. Two staff assigned to Devin for 1:1 service were trained by the behavior specialist; they are in the home for 90 minutes two afternoons a week each, and the behavior specialist is there several hours one afternoon a week. Devin likes doing outdoor activities with his 1:1 staff, but is usually not willing to do the behavior specialist's exercises with the 1:1s in his special learning space. Despite repeated recommendations from qualified professionals, no treatment, training, or supports are provided on the weekends. Trained respite has not been arranged, although Devin often spends Friday nights with his great-grandmother. His grandmother realizes that the current services are less than what were originally designed, but she feels she and Devin are lucky to have the behavior specialist.
Devin has shown improvement as a result of the thorough plan and skilled work of the behavior specialist and the assistance of the 1:1 staff. In addition to a need for more hours with the behavior specialist, increased speech therapy, occupational therapy with a specialist in sensory integration dysfunction and auditory integration training, and orthodontic treatment, there are two missing services:
• social opportunities with coaching before and during his interaction with other children to improve reading nonverbal cues, understanding the perspective of others, synchronizing with others, sustaining conversations, learning the rules of games, respecting personal boundaries, and avoiding getting over stimulated; and
• weekend activities with assistance designed to fit his comprehension limitations, such as help getting involved in the Special Olympics. For example, the family lives on a fast-moving creek which worries his grandmother because Devin does not know how to swim. She would be willing to accompany a therapeutic swimming teacher who could help Devin understand concepts such as the deep end of the pool while teaching him to swim. His grandmother and her fiancé bike with Devin almost daily but they cannot teach him to swim and have limited knowledge about how to arrange other therapeutic recreation for Devin.
Although he does not have the complete array or quantity of home-based services that were recommended, Devin is making progress as a result of the efforts of the behavior specialist in providing a thorough assessment and intervention plan, therapy in the home, supervision of 1:1 staff, guidance for his grandmother, and consultation to the school.
SHENTELLE G.
Shentelle is a 15-year-old girl (DOB 5/3/89) who has been in the custody of the Department of Social Services for four years. She recently (7/04) moved to a group home in Holyoke after a long residential placement at Valleyhead School. The one assessment in her record has been ignored, and despite all the resources spent on Shentelle's care, she has learned little about the causes of her behavior and remains furious at DSS for ruining her life. She believes she will be successful as soon as she gets back to her mother, but without considerable supports (which she would have to be involved in designing), she is being set up to fail.
Whether she returns to her mother or moves into a foster home placement, Shentelle would require intensive home-based services, including a 1:1 coach working in the home under the supervision of a therapist skilled in attachment problems. The coach would assist Shentelle at home and in the transition to a new school, and would also provide daily support to her caretakers on unconditional care.
Shentelle was born prematurely, weighing four pounds, and she had pneumonia as an infant. Her mother was young and her father left before she was born and has had no contact with her. DSS initially investigated because of domestic violence between her mother and her boyfriend; her mother dismissed two incidents of physical abuse of Shentelle as necessary discipline. Shentelle remained in her mother's care until she was 11, and reportedly she was sexually assaulted by her babysitter's boyfriend. Shentelle had previously lived with her grandfather who was a convicted sex offender, but it is unknown whether he victimized her.
When Shentelle entered DSS care, a psychological evaluation was conducted to assess oppositional behavior toward her mother and aggressive behavior toward her 3-year old sister. The evaluation (8/00) stated that Shentelle was not learning to identify her feelings, verbalize them and tolerate them without acting on them. The evaluator reported Shentelle had a great need for affection, but was lonely and disconnected. He concluded that she had a profound disturbance in attachment to her mother – a finding that was independent of her intense feelings of being displaced by her sister, seven years her junior. Unfortunately, the evaluator did not have any information about her mother, and recommended individual therapy (without her mother) to learn about her feelings and understand what caused the disturbance in their attachment.
Despite this evaluation, Shentelle did not have therapy with an expert in attachment problems. She was only in a foster home for a few days before she was placed at the Center for Human Development (9/21/00-12/7/00), and began the BayState Partial Hospitalization Program. She was admitted to Providence Hospital Acute Residential Treatment program in early 2001 for six weeks. The ART discharge summary expressed hostility toward her mother who had encouraged Shentelle not to take her medication, shockingly commenting that "after meeting her mother, it was not surprising that Shentelle wants to become a stripper." The DSS Request for Residential Placement Panel Review, which indicated "we will refer to DMH if we get a new diagnosis at ART," was a lengthy non-individualized 10-page form that did not capture Shentelle's strengths or needs; the 8/00 psychological evaluation was not mentioned, and Shentelle was described superficially and blamed for her multiple placements: "Client currently does not have a stable place to live ... (T)he Department is currently unable to locate an adequate foster placement. Shentelle is on the waiting list for a DARE Mentor home ... [She requires] a foster parent who is experienced and able to carry out a structured behavior management plan."
In early 2001, Shentelle was admitted to the Key residential program where she remained for about a year (2/23/01-3/18/02). A 12/01 Key psychological evaluation when she was 12 found that she was extremely angry, depressed, and preoccupied with abandonment and victimization, with simplistic problem-solving, limited frustration tolerance, and fewer resources than others her age for coping with stress. A diagnosis of PTSD was not apparently followed by trauma treatment – the Key program did not provide any therapy summaries, just monthly medication reviews by the Key consulting psychiatrist. The psychiatrist described virtually every visit as beginning with Shentelle as "her usual rude and oppositional self" and ending with her being "engaging;" but it is not evident that Shentelle was helped to understand the source of her feeling states (presumably anxiety and a fear of trusting). A 12/01 letter from a Key social worker to DSS showed that the program had lost patience with both Shentelle and her mother:
“In August 2001 you were apprised of the concerns regarding [her mother's] verbally abusive, demoralizing and hostile interactions with Shentelle. [Her mother's] use of profane language, blaming attitude and lack of ability to engage in constructive and empathetic dialogue were catalysts to Shentelle's outbursts [her mother accused Shentelle of being responsible her losing custody of Shentelle's sister] ... Parameters for appropriate behavior were clearly defined for [her mother]. She was expected to maintain a positive and non-blaming attitude toward Shentelle. Her behavior has consistently undermined the authority and the structure of the program. We recommended that a return to [her mother's] home was unrealistic and would severely compromise Shentelle's safety... [Her mother's] visits were stopped 9/21/01 until 11/1/01 ... since contact with her mother has resumed Shentelle has acted in an increasingly impulsive and aggressive manner...She is at risk of being placed in a more restrictive environment to address her behavioral and emotional needs...continued contact with her mother will severely compromise Shentelle's well-being.”
Shentelle moved to Valleyhead School from Key in 3/02 because of her aggression, explosiveness, sexualized behavior and speech, and running away. Initially she was described as a good student and "a lovable child who wants to be cared for." But after three months, she was characterized as being "extremely emotionally reactive and easily overwhelmed when frustrated or slighted. Shentelle is very dependent on external sources for self-esteem and validation and seems unable to use any internal resources to feel positive about her self. Thus, if a staff is not immediately available to respond to Shentelle on demand, she can become explosively angry. She alternates between being tough and verbally aggressive one moment, fragile and labile the next." Two years after her first assessment had identified attachment problems, expressing and managing feelings, and a cognitive tendency toward problem solving behaviorally as priority areas for treatment, her treatment has not effectively addressed these issues. Shentelle had not worked with a clinician skilled at treating children diagnosed with PTSD. The program focused on getting her behavior under control through verbally-based thinking methods that did not fit her disability. In a 12/02 treatment update, Shentelle's guardian ad litem expressed concerns about over-stressing Shentelle about placement: "She is under a lot of pressure to tell her workers, GAL, etc. whether she wants to return to her mother or go into a DARE home. It is a terrible position for a 13-year old to be in. She is desperate to retain her attachment to her mother despite their rough history and fears that if she describes honestly her conflict about her permanency plan she will compromise one option or another."
Two years after her admission to Valleyhead, her progress was described as minimal (she was placed at Valleyhead from 3/02-7/04). Shentelle moved to the Gandara group home in 2004. Her treatment plan at Gandara group home was not available, but the director indicated Shentelle arrived in July and is involved in anger management, life skills and DBT groups and individual and family therapy; she no longer takes medication. Her therapist appeared unsophisticated, and the group home was chaotic. She talks with her mother by phone every night and just had her first weekend pass to participate in her mother's wedding. Her mother lives about 20 minutes away, but often cancels visits and therapy sessions. Shentelle has quickly worked her way up the level system, with no self-harming behaviors and volunteering at a nearby nursing home. Shentelle hopes she will graduate from Gandara in a few months and will move into a specialized foster home. She believes she can make it with her mother, but does not think she will be placed there. Asked about trauma treatment, neither the director nor therapist seemed to know what I was talking about. The director said, “Shentelle's self-harming behaviors will just naturally go away. She'll have to have more awareness between herself and her mother so she does not repeat the estrangement.” Gandara has its own foster homes in which they prefer to place girls because, if necessary, they can return briefly to the group home in crisis. Asked about wraparound services for Shentelle in the foster home, the director said the case manager would visit the home weekly and Shentelle would start with a new therapist. The director commented, "She requires a lot of structure, someone who has a lot of experience dealing with oppositional kids. If she was a safety risk, she could have a 1:1." It is my belief that the director has underestimated the amount of assistance the foster parent and Shentelle would require.
Shentelle comes across as older than 14. She is furious at DSS because she says the agency repeatedly has lied to her. She wants to return to her mother. She softened when talking about her volunteer work at a local home for senior citizens. She has empathy for the residents, and obviously is still grieving her grandmother. She would like to work in a mental health program for children because she believes she would understand them better than most staff people she has met. She cares for and misses some Valleyhead staff, but says she never felt understood there. Shentelle agrees that she has an anger management problem. When she got mad in the past, she said she abused herself. Now, she says if she gets mad, she goes into her room and listens to music. Shentelle is attending Springdale Educational Center where she is in a small classroom. Shentelle does not like her special school and wants to be in a regular school. She does not think she has a learning disability. She wants a school that will prepare her for college.
Based on reading her record, interviewing Shentelle at the Gandara group home, and interviewing the program director and therapist at Gandara, my opinion is that in 2003 and continuing to the present, Shentelle is at risk of repetitive restrictive placements and has the following needs:
• To understand the reasons for her early attachment problems with her mother and accept that as a child she could not have caused them;
• To understand that an insecure attachment and sexual abuse resulted in her needing closeness but not trusting that anyone would be consistently loving;
• To learn what it will take now to trust others, form close relationships and be able to tolerate disappointment;
• To become confident of ways of expressing her anger that fit the situation (rather than blaming and hurting herself or having a flood of anger from the past);
• To continue to identify her feelings, verbalize them and tolerate them without acting on them by using self-talk and self-calming techniques;
• To understand her difficulties with auditory attention and verbal abstract reasoning (which mean that she solves problems by acting instead of being able to think them through) and to learn how to talk problems out before acting;
• To ask for help to continue doing well in school to achieve her goal of going to college; and
• To get recognition for giving to others, such as volunteering in the seniors' home or helping children.
This view of her needs fits with her psychological evaluation in 2000.
Shentelle is being set up to fail because the group home and foster home program are underestimating how much support she and her caretaker will require since she has not lived in a family for four years and remains confused about how early attachment problems and sexual abuse are still reflected in her behavior. Shentelle is likely to have outbursts that could result in restrictive placement if she is limited to weekly sessions with a new therapist.
Shentelle's caretakers, at home and in school, will have to be well trained in her trauma-related reactions to loss, lack of attention from others, and conviction she will be disappointed. She is likely to be untrusting, to expect abandonment and victimization, and to overreact with anger for a long time. Her caretakers, at home and in school, will have to be taught how to set limits while avoiding power struggles with Shentelle. They must learn to focus on her strengths even when her behavior is not satisfactory.
A therapist skilled in attachment problems would teach Shentelle how to separate her past trauma from the present and not blame herself for it. Working individually with Shentelle, the therapist also would be able to teach her self-calming techniques and how to use self-talk to increase her confidence that she is lovable. The therapist would guide the family with whom she lives, and instruct family members not to take her rejection personally, but rather, recognize it as part of her difficulty in trusting others. The therapist would develop a crisis plan with the family and aide, and set up an on-call schedule for responding in crisis. In addition, her therapist would provide clinical supervision to a 1:1 coach.
A 1:1 coach in the home working under the supervision of Shentelle's therapist would coach her in trusting others and coping with anger and disappointment. This coach would encourage Shentelle to use positive self-talk to prevent angry outbursts, to help her and her mother when past hurt causes friction, to help arrange a school program with cosmetology, and to help her not to undermine her progress in school. In addition, the coach would provide daily support to her caretakers on unconditional care, and help family members focus on the positive and avoid power struggles. Shentelle has the neediness of a child younger than 14, but she has the bravado of someone older. She wants desperately to succeed by herself and does not trust adults to help her. The trickiest part of arranging care to prevent restrictive placement is her agreement to a 1:1 coach to help her achieve her school, social and family goals.
Shentelle wants to live with her mother and is likely to do so on her own when she is 18 if DSS does not allow it before then. It is not know whether her mother and new stepfather could be helped by a home-based provider to participate in a process of clarifying Shentelle's needs, assessing whether they could meet her needs, and what services would be necessary for them to do so. It is not known whether her mother will allow someone to assist her and Shentelle in improving their relationship. There are important reasons to assess now whether her mother could be supported to meet Shentelle's needs: (1) the earlier in adolescence a child leaves residential care for a permanent home, the better the chances for having enduring connections in adulthood; (2) Shentelle's anger at DSS for keeping her from her mother could result in impulsive adolescent actions that would jeopardize a foster home placement and cause setbacks that could be avoided; (3) because the attachment and sex abuse issues have been smoldering between them without treatment, with her mother blaming Shentelle in the past, if she were to return to her mother with home-based supports, intensive services would have to start with Shentelle and her mother long before she leaves the group home; and (4) if Shentelle participated in a genuine assessment of the match between her mother's home and her needs that concluded intensive home-based services would be insufficient to make that home permanent and safe, she would be more likely to decide that she wanted to do well in a foster home.
In my opinion, Shentelle's needs could have been and should now be met with intensive home based services, whether she lives with her mother or in a foster home, including:
• 1-on-1 behavioral services in the home (including weekends);
• Individual therapy, family therapy and in-home behavior management guidance for her foster parents or mother;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, and school coordination and a crisis plan, guided by strong clinical supervision.
RICHARD G.
Richard is an articulate, bright Caucasian/Japanese almost 17-year-old (DOB 11/12/87) young man who has lived away from home since March 2002. During that time, he has twice been hospitalized, placed in two different residential programs, and in two foster homes. Although he regularly enjoys successful weekend home visits, he continues to live outside his home because his mother, a single parent who works the night shift as an emergency room nurse, will not leave him alone or unsupervised with his younger brother, currently in remission from leukemia. His mother also says that there is no appropriate school for him to attend within commuting distance of their Athol home. Richie recently moved to his second foster home. He attends Northampton Center for Children and Families (NCCF) as a day student; he was discharged from the NCCF residential program in March 2004. Despite tremendous gains at NCCF, he remains at risk of another hospitalization or residential placement because he wants to be at home and finds it hard to adjust in foster homes.
Based on a review of records and interviews with family members and Richard's therapist, it is my opinion that his family would greatly benefit from home-based services, specifically, an in-home coach to provide direction and supervision to Richie; guidance and reassurance to his mother and brother; and transportation for Richard to school, athletic events and other after-school activities. Ongoing clinical supports and a hands-on case manager to coordinate the services to make sure Richie's needs are met are also necessary.
Richie's mother, who was 17 when he was born, reports he was a colicky baby with an irritable temperament and high motor activity who did not feed or sleep well, and was difficult to comfort. His brother was born when he was 3 years old. His father was a violent substance abuser (with possible attention deficit disorder or bipolar disorder) who left the family when Richie was 5. For a number of years, his mother's boyfriend lived with them, but the couple separated in 2001, and again in 2002, because of his gambling and drinking and different views about disciplining Richie. Their separations were difficult for Richie, who recently has reconnected with his "stepfather." When Richie was 6, his pediatrician diagnosed him with ADHD and prescribed Ritalin, which decreased hyperactivity and aggression. His behavior deteriorated in fourth grade, and at age 9, he had a pediatric neuro-development evaluation (7/96), by Dennis Rosen, M.D., who diagnosed ADHD, learning disabilities in written expression and fine motor coordination, oppositional defiant disorder, and enuresis. Dr. Rosen recommended a psychologist as a liaison between family and school. A psychological evaluation found an FSIQ of 99 (V-111, P-86), with high verbal auditory scores and low visual motor and visual scores. In a psychiatric evaluation at UMass Medical Center (10/28/97), Rebecca Knapp, M.D., described Richie's experience of several days of extreme hyperactivity, irritability and aggression followed by an abrupt shift to depressed mood and increased sleep, both of which caused problems in school. Dr. Knapp concluded he met the criteria for Bipolar Disorder (rapidly cycling on a weekly basis with two to three days of mania, one to two days of depression, then one to two days of stability); his diagnosis was further complicated by co-morbid ADHD (with the symptoms of ADHD worse when in mania) and also some symptoms of Pervasive Developmental Disorder including poor reciprocal social skills, sensitivity to noise and tactile stimulation, and intense interest in math and science. Dr. Knapp reported that Richie had witnessed domestic violence and noted that his hyperarousal was consistent with PTSD, but concluded that he did not meet criteria for PTSD. Citing his remorse, she also ruled out an emerging conduct disorder because he disliked himself for getting out of control.
Dr. Knapp's psychopharmacology notes indicate that at age 11 Richie was taking Ritalin, Depakote and Risperidone. From April 1998 to November 1998, he attended the Dr. Franklin Perkins School in Lancaster as a day student, but was hospitalized at Westwood Lodge (9/29/98-10/7/98) due to his agitated state, disorganized thought content, and hallucinations. In 1999, Dr. Knapp described him as functioning better than he had in years on an increased level of lithium, but when his mother reduced his Risperidone because it caused clumsiness that interfered with hockey, he decompensated and was hospitalized at Brattleboro Retreat (5/30/99-6/07/99).
Richie's DMH Initial Individual Service Plan (10/15/99) reported that his therapist Steve Rhodes worked with him on impulsivity, patience, and control of his emotions, and also did family therapy work in the home once a week. In January 1999, Richard attended Poet Seat School as a day student; his case manager said he made progress and did well academically: "Richard is a deep thinker who experiences deep emotions, and is seen to be an 'amazing, insightful kid.'" Richie was supposed to receive Intensive Homebased Outreach Services (IHOP), a DMH service provided by Clinical Support Options in Greenfield, but his mother said the outreach worker missed appointments. His therapist said planned respite during the summer of 1999 would have been of great help to the family, but was unavailable. The case manager's notes indicated that respite care would be reconsidered in six months. In 2000, the family situation became more stressful when Richie's younger brother was diagnosed with leukemia and began cancer treatments. In the fall of 2001 Richie's mania increased; his mother said he was too big for her to restrain, and in March 2002 he was hospitalized again at Brattleboro Retreat after smashing his brother's door with a hockey stick. While waiting for a placement at NCCF, he had a lengthy stay at Gill House in the spring of 2002, with a hospitalization at Franklin Medical Center for agitation and command hallucinations. In July 2002, he was admitted to the residential program at NCCF. The NCCF assessment indicated a generalized anxiety disorder and language-based learning disability in addition to bipolar disorder. On admission he was switched from Risperdol to Seroquel, and DDAVP was tried for bedwetting. After 20 months in residential treatment at NCCF (with one hospitalization in 2/03), reports indicate he made "huge gains," learned to use Dialectic Behavioral Therapy (DBT) to calm himself, improved in social skills with peers, and accepted his relationship with his mother. Discharge from the NCCF residential program had been recommended in 12/03, but his mother feared he would decompensate. He was discharged to the day program in March 2004 and transferred to TriCounty Youth Program's specialized foster care as a transition before going home to live with his mother and brother. Richie expressed feelings of sadness because he wouldn't be able to "be a kid" at home; he also felt guilty his problems had affected his brother. He felt abandoned because his mother seldom visited (only six family therapy sessions occurred in 20 months).
In an interview with me, Richie was anxious when he talked but presented his ideas well. He is socially not at his chronological age, but his large size makes him appear older. His brother, now 13, looks tiny next to him. They played hockey outside together during their mother's interview. The boys get along well now, but she said for a long time Richie's brother was afraid of him. She did not mention that his brother has emotional problems, as reported by Richie's NCCF therapist.
Richie said his first foster home fell apart soon after he arrived because the foster father was hospitalized in intensive care for nearly two months. He described his second foster mother as more caring and attentive to him, but added, "There's no place like home." He is frustrated he has so little freedom and cannot venture out of the foster mother's sight. He says he wants a job because he loves money, though he acknowledged that he is struggling with his impulsive spending habits. Asked about bipolar disorder, he said, "It's part of me, but it's not me. I have to learn to cope with it, but it's not a horrible thing that's going to ruin everything. I try to appreciate my better qualities. But my mood swings mean I don't give myself credit. Then I feel down. When things aren't great, I get anxious. I do pushups or go outside." He would like to participate in organized sports, but his foster mother is not able to drive him to and from practices and games. He described NCCF as "a wonderful school, no violence, very peaceful. Most kids could handle themselves better if they had the 1:1s we have. Without my school I wouldn't be able to talk with you like this without blowing up." He said the NCCF's instruction in the DBT concept of "wise mind" has helped him a lot.
Richie's mother is an aggressive advocate and says she has had many disputes with DMH (including when officials closed his case because he was doing well yet he was in the hospital less than six months later). She regularly called state offices for help, but said Richard only became a DMH client when his behavior reached an extreme. She criticized Gill House where staff placed Richard, then 14, on the adult unit due to his aggression and, when she complained, returned him to the adolescent unit and drugged him until he drooled. She said the parents in the foster care program currently serving Richard have not received adequate special training about bipolar disorder to effectively help him. On the other hand, she says NCCF is the best thing that ever happened to Richie and her family; she recommends it as a model program. Although for years she had a positive relationship with Richie's first psychiatrist, Dr. Knapp, she said she has had a hard time with the many individuals who have blamed her for Richie's problems.
She credits Richie's present success to three factors: (1) proper medication (Abilify); (2) NCCF's school and clinical program; and (3) Richie's maturation. While she is proud of Richie's growth and accomplishments, she reiterates that he previously was "terribly sick and dangerous." She agrees that the last two years represent his longest period of stability and acknowledges that his weekend visits go well, but she remains too apprehensive to have him home yet. Her fears appeared to be based on her view that (1) he needs constant supervision and re-direction and she works three 12-hour shifts from 1 PM to 1 AM weekly (when she leaves her younger son alone); (2) "the only school that works for him is NCCF" and he cannot commute there from home; and (3) if he returned home, she believes DMH will close his case, leaving him without access to adult services when he turns 18 next year. "He's an awesome kid, but when he is manic and depressed at the same time, he's very dangerous to others and himself. He might not ever live at home," his mother says. When asked, his mother says it would be ideal to have Richard at home with a therapeutic aide when she is at work, but states there is no such service.
Based a review of Richard's available records, and interviews with Richie, his mother, and his NCCF therapist, it is my opinion that his needs in 2003 and continuing to the present include the following:
• To be challenged in school because he is bright, writes poetry and songs, and can go to college;
• To be reminded to use his "wise mind" and self-soothing techniques when he starts to become agitated;
• To be encouraged to appreciate the good things about himself when he starts to get depressed;
• To have gradually increasing independence, including a part-time job, with the security of adults to coach him to use stress tolerance, budgeting and exercise as management techniques;
• To refrain from getting stuck on feeling rejected by his mother or being afraid of himself
because she remains apprehensive since he broke down his brother's door years ago, and remind himself that (a) he has improved a lot, (b) he does well in school and on weekends at home, and (c) when he has a problem, he can manage it with help and will not fall apart again; and
• To be involved in athletic and other after-school activities.
This view of Richie's needs appears to be shared by NCCF staff. NCCF staff also are concerned that Richie feels rejected by his mother and will not do well in a foster home because he wants to live with his mother. But NCCF apparently has not taken additional steps to actively address her apprehensions about his return home. His therapist did not know whether anyone had seriously discussed with his mother that she change to a weekday daytime work schedule, during most of which the boys would be in school and therapeutic after-school supervision for Richie would be easier to arrange. A strong home-based provider would have helped her develop the confidence that Richie could be safe at home if he continued as a day student at NCCF and she had 1:1 assistance with him during particularly difficult times each day (including weekends). If Richie's needs are best met by remaining at NCCF and by living with his mother, a special arrangement should be considered to enable him to remain at the school the three nights his mother works, attend school four days a week, and live at home four nights and three days a week. This might be followed by arranging for a transfer to a specially arranged school program in Greenfield with transportation and his mother making the sacrifice to work day times five days a week with after-school support for him.
A 1:1 coach in the home working under the supervision of Richie's therapist would: (1) remind Richie to use his self-soothing and "wise mind" methods to cope with stress as it occurs; (2) remind Richie of his strengths, especially when he does not perform as well as he would like to help him not become depressed; (3) de-escalate any situation where Richie feels angry; (4) help Richie with budgeting and adhering to his spending limits; (5) assist him in finding a job, engaging in athletic activities and positive hobbies, and behaving in ways that others will like him; and (6) in the future, help Richie investigate, apply for and successfully adjust to college. In addition, the coach would offer guidance to his mother, reminding her what Richie requires to manage stress and disappointment, reassuring her that Richie is not dangerous, and demonstrating successful ways to de-escalate angry situations with Richie. The coach could be present during hours his mother was at work that Richie was not in school. Initially, the coach could drive Richie from NCCF to home. When Richie makes a transition to a nearby school, the coach could play an important role in making sure the school offered him the supports NCCF does.
A therapist working with Richie and consistently with his family would: (1) expand Richie's repertoire of techniques for coping with stress, disappointment and anger; (2) guide Richie in observing when he is feeling depressed or agitated and how to reduce these mood fluctuations; (3) assist Richie with his money spending problem; (4) address their father's potential positive and negative influences on their family dynamics and what to do about them; and (5) teach Richie additional ways to learn how to live successfully with bipolar disorder. In addition, the therapist would provide clinical supervision to his 1:1 coach. The therapist would develop a crisis plan with the family and coach with an on-call schedule for responding in crisis.
In my opinion, Richard's needs could have been and should now be met with intensive home based services including:
• 1-on-1 behavioral services in the home (daily, including weekends);
• Individual therapy, family therapy and in-home behavior management guidance for his mother;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, school and work coordination, and a crisis plan, guided by strong clinical supervision.
TYRIEK H.
Tyriek is a large 11-year-old boy (DOB 10/29/83) who started taking Lithium and Risperdal at age 4 and has been at Three Rivers for nearly four years. He has average intelligence and loves spouting facts about dinosaurs; he enjoys art and made a diorama of a clay dinosaur surrounded by palm trees. His mother is loving and patient with Tyriek. She is glad to see him happy at Three Rivers and finally productive in school; she knows he cannot be provided with an adequate program at any of the three local schools he has attended. However, she wants him home. Despite her involvement and commitment, his mother still does not know the source of Tyriek's behaviors. Her tragic upbringing, her abusive marriage, her difficult pregnancy, her severe depression after his birth, the death of his grandmother and the absence of his father are ignored in the clinical documentation; instead, mental illness on both sides of his family is emphasized. Tyriek sometimes says past memories cause him to deteriorate, but he does not share them. He has continuing problems with defecating in his pants and hiding them and is frightened of the bathroom. This type of behavior might suggest sexual abuse, and his older half-brother had sexual acting-out behaviors, but whether trauma his mother might be unaware of contributed to Tyriek's serious emotional disturbance is not discussed in the record.
In 2003 Three Rivers was ready to give up on Tyriek. They requested that Tyriek be placed in the Lindemann Special Treatment Unit for a trial of the last remaining neuroleptic, Clozaril, which has not been used much with children and requires weekly blood draws (this treatment is made more complicated by his rare blood disease similar to sickle cell). The unit closed before Tyriek moved there. Shortly afterwards, another medication, Abilify became available and Tyriek has responded well to it. Recently, Tyriek is better than he has ever been at Three Rivers: He is bright and creative and shows spontaneous enjoyment and is not psychotic, agitated or aggressive. It was a major achievement when he managed his anxiety to ride a school system van not driven by someone familiar for a weekend home visit and he has been able to plan other trips off grounds.
An opening is anticipated in November 2004 at Northampton Center for Children & Families; Three Rivers hopes to transition Tyriek to the NCCF residential program. They have requested that DMH fund at least one Three Rivers staff to go with Tyriek to help him adjust and hope NCCF will accept this idea. Tyriek wants to go to a less restrictive setting, but Three Rivers staff are worried that his anxiety, his difficulty with even small changes, and his reaction to leaving Three Rivers will cause him to decompensate and that he will not be able to make the move. He would live in the NCCF latency age house (ages 6-12), and it would be a big adjustment not to be within staff sight every minute and to have a longer school day in larger classes where more is expected of each student.
Tyriek still has great difficulty in saying what bothers him, and he has to be given space and time alone, but it may be a challenge for the NCCF staff to allow this. For years, his mother has disagreed with the Three Rivers therapist, who maintained Tyriek was psychotic. His mother thinks the therapist misinterprets what her son is experiencing. His mother says that Tyriek may have no problems for several days, but then gets upset; she thinks his therapist's perspective is that he acts up all the time, rather than looking at the cause of each incident. His mother worries that he is over-stimulated by the children, staff and environment at Three Rivers. His mother says Tyriek has no tolerance for younger children and when she takes him to a family cookout and he becomes bothered by other children, she separates him and calms him down. She was troubled that Tyriek recently was doing so well and then suddenly deteriorated. She wondered whether this was due to medications: he was being weaned off Zyprexa because Medicaid will not pay for three antipsychotic medications for one patient (he also takes Abilify and Lithium). His mother also believes that Three Rivers' reliance on restraint may have enabled minimal fostering of Tyriek's own methods for self-soothing. She does not like the way some Three Rivers staff talk to Tyriek, and reports that some of his favorite staff have left the program, which has a high staff turnover.
Tyriek's mother is hopeful he will move to the NCCF program. She says it will be a challenge for him to adjust to a move, but she cites the advantages to such a move: new staff observing his behaviors, identifying his needs and tailoring fresh interventions for him, as well as having higher expectations of him in the classroom where he can excel. His mother hopes that NCCF will allow her to play a major role in his transition. Her car is not working, which has reduced the duration and frequency of her visits to Three Rivers ñ an hour-long trip from her home. She believes she should be going to Three Rivers (and eventually NCCF) several times a week to give Tyriek adequate transition support. She said that she requested a transportation voucher repeatedly from Tyriek's case manager at the Department of Mental Health without success.
Asked what it would take for Tyriek to go home, the Three Rivers supervisor says this is far in the future. His mother would have to believe his violence had abated and that she could de-escalate his problem behaviors. He would need a school program that fit him, a good therapist, probably a 1:1 staff in the home, and a crisis plan. Three Rivers says he does well on home visits (some lasting longer than a weekend) in part because his mother provides a familiar environment where she gives clear limits, and he goes over their home routine with his therapist and his plan for coping with the van ride before leaving the facility. On his home visit two weeks before this interview, his mother said he was "better than ever." He decided to have a tag sale in the front yard and lasted an hour, enough to make $12 for some old toys so he could buy something new. The only explanation that his therapist gives for his doing so well on home visits is that he "holds it together" better than he does sometimes in the program. This explanation, as if his behavior was volitional and he could choose not to lose control, does not fit the way he is described in the Three Rivers treatment summaries.
His mother owns a Habitat for Humanity home that she probably cannot consider leaving in order to live closer to NCCF, if Tyriek moves there. But her home is in a deteriorating neighborhood where the young people are violent. His mother wishes Tyriek could go outside on his bike as he does in the large yard at Three Rivers, but thinks her street is too dangerous. Recently her older son has been negatively affected by neighborhood influences, which heightens her fears for Tyriek.
Based on reading his record, observing Tyriek with his mother at Three Rivers in 2003, interviewing staff at Three Rivers in 2003 and 2004, and interviewing his mother at home in 2003 and 2004, my opinion is that in 2003 and continuing to the present, Tyriek has the following needs:
• To see his mother frequently and be able to call her on the phone once or more a day;
• To have an enriched, small classroom where his intelligence and artistic interests are encouraged;
• Not to be over-stimulated by noise and activity and be able to chose a safe way to go to a calm place;
• To have a predictable routine and clear limits with loving support to feel safe doing more things on his own;
• To anticipate that an upcoming change or new challenge will make him anxious, talk about each aspect of it and plan how to manage his anxiety;
• To be encouraged to say what bothers him, but to be given space and time alone when he is upset;
• To learn new self-talk to reduce his thoughts that someone is against him and to be able to rely on others to help him not turn his anxiety into anger;
• To be helped in coping with his bathroom anxieties, to understand what leads up to defecating in his pants and learn new self-talk to use the bathroom instead;
• To improve in understanding facial expressions and other subtle communication;
• To have help figuring out how to respond when girls flirt with him; and
• To talk about his bad memories without feeling unsafe and learn how to tell himself that the past is over and not think it will happen again in the present.
This view of Tyriek's needs appears to be shared by Three Rivers staff. They are convinced that Tyriek's needs cannot be met outside of a residential setting at this point even though he does well on visits home. Because of their view of his psychosis and his unresponsiveness to medication until recently, Three Rivers staff never considered discharging Tyriek home during his nearly four years there. His mother wants him to come home, but has no confidence that any school near her home could address his needs so she has not imagined what it would take to transition him back home. If he were to go home, in addition to a small classroom where staff are trained to meet all the needs above, he and his mother might require almost live-in assistance to ensure that his needs were met. The residential program's multidisciplinary approach would have to be replicated in the community, which did not happen when three community schools and community mental health failed to provide adequate services before. Hopefully his move to NCCF will meet his needs, resulting in new gains and planning for intensive home-based services and a specialized school to support a return to his mother in the near future.
SHEENA M.
Sheena M. is a 19-year-old young woman (DOB 2/15/85), although she acts much younger. She now lives with her father (next door to her grandfather) after more than two years at a group home, Howard House. Sheena's high level of social awkwardness, anxiety, poor memory, passivity, confused thoughts, inappropriate affect, and depression were well described in a 2001 psychological assessment.
Although she has had many evaluations, none provided any diagnostic clarity about Sheena's combination of developmental delay, emotional problems and family difficulties. Evaluated in special education at age 8, she had significant perceptual organization problems and slow processing (verbal IQ was 75, performance was 49). At age 14 Sheena had a psychotic episode, and was started on Zyprexa and then Risperdal. In 2000 she was diagnosed with Schizophreniform Disorder with the observation that it was "unclear whether her impulsivity is ADHD or anxiety."
As more fully described below, Sheena’s needs could have been and should now be met with intensive home-based services, which include an active interagency team with case management, 1-on-1 behavior services, family involvement, and school coordination and a crisis plan, guided by strong clinical supervision.
Until she was placed at Howard House at age 16, Sheena had lived with her mother and younger sister. She currently has before and after-school supports, still attends the Adolescent Support Program (ASP), a special Pittsfield public school, and works in a part-time assisted employment program. On weekends she visits with her mother, younger sister and niece, and also likes to spend as much time as possible with her 24-year-old boyfriend who lives on Supplemental Security Income with his mother and stepfather. Her mother said that Sheena was defiant as a young child and they always had difficulty getting along. Sheena had a hard time in a special needs preschool because of her delayed language and clinginess. She moved to Howard House in 2001; her expected discharge date in 2003 was postponed for several months due to a disagreement between the Departments of Mental Health and Mental Retardation as to financial responsibility for her adult services.
Although she receives some services in her father’s house, she would benefit from intensive home-based services. Such services should include 1:1 coach to offer her instruction, as well as guidance to her parents and their respective households; and counseling sessions, individually and with her boyfriend, to help her develop better communication skills; and ongoing medication consultation and case management.
Sheena, at age 16, was reading at the fifth grade level and doing math at the fourth grade level. Special education viewed her problems as emotional; DMH saw her as having right hemisphere deficits causing mental retardation and social problem; and DMR viewed her as having a low IQ that limited adaptive functioning. Most interventions did not recognize that she did not comprehend instructions because of her slow processing, and instead focused on getting her to comply. Early evaluations encouraged social skills training and self-confidence building, but an 11/02 evaluation for DMR concluded she was "functioning like a retarded person" and implied that improvement was not possible.
Instead of going to Howard House in 2001, (the explanation for Sheena’s placement was that neither of her parents seemed able to live with her), Sheena could have been placed in a foster home where her needs could have been met by a support team familiar with working with young people with developmental disabilities. The team could have worked with Sheena with the goal of teaching her the skills necessary to become independent.
Two years after Sheena entered Howard House, in September 2003 her DMH case manager convened a meeting with DMR and other providers to discuss her post-discharge plans and the agencies responsible for her treatment. DMR already had determined that she was eligible for adult services from the department. The DMH consulting psychiatrist indicated that she is not schizophrenic and does not have a major mood disorder: she may be overwhelmed by anxiety but the underlying issues are her cognitive limitations. Based on her progress at Howard House, a residential placement was rejected due to concerns she might become institutionalized. But she was seen as "not competent to make informed decisions" and requiring "constant supervision given her limitations with boundaries and openness with strangers." There were questions about the adequacy of past assessments. It was agreed that she learns best through repetition with simple one-step goals and immediate reinforcement. Her anxiety and cognitive distortions interfere with her success and using relaxation and behavior-cognitive strategies was recommended. The group concluded, “There needs to be clear communication with clear expectations between providers.”
It was decided that DMH would not be providing services after her 19th birthday and she would receive outpatient services at the local community mental health center. Although DMR had deemed her eligible for services, the agency declined to absorb the costs for foster home placement, as Sheena and her parents requested. Plans were made to move her into her father’s home. Her parents became her official guardians and initiated a Roger's order for her psychiatric medication. Her father, who was in recovery after a history of substance abuse, started planning for Sheena's transition to his home. At her father’s insistence, DMH agreed to pay for in-home staff to help Sheena get ready for school in the morning, and interact with her after school before he returns home from work. Her father expressed gratitude for the help, but said the assigned staff have been babysitters, and have not provided guidance and instruction to help his daughter become more independent. He thinks a 1:1 staff person should be teaching Sheena money management skills, shopping and cooking skills and investigating community activities suitable for a 19-year-old young woman.
Sheena’s other current services include a tracker from the Key Program who monitors her activities at ASP and in the supported employment program run by the ARC of Berkshire County. Both parents credit Kathy Casella, her DMH case manager, for the current array of services. Ms. Casella acknowledged that the initial 1:1 worker was a "disaster" and said she is hopeful the current staff person is more effective. However, when I asked if the staff person had the training to work with a young woman with Sheena's learning disabilities, Ms. Casella made it clear that Sheena is retarded and she did not know if the 1:1 had training or experience with developmentally disabled young adults. It is unclear if DMR or the Arc will be providing additional services to Sheena.
For her part, Sheena likes her job and gets along with her Key tracker. She wants the court to allow her to complete school in June 2005, live with her boyfriend and work. Even though her parents are her official guardians, she says no one can stop her because she will be 20. Her parents want her to stay in ASP and the work program for additional year and continue to live with her father because they do not want to lose the after-school services. They maintain she needs another year of maturity because thus far she is unable to work on her own, and that her boyfriend is limited himself.
Sheena still has her little girl temper tantrum way of arguing with her mother over ridiculous things. She is frustrated that her mother gets her SSI check and doles it out in small amounts. Her mother says Sheena spends money frivolously, but nonetheless, said she might be willing to set up an account with Sheena that would give her daughter ATM access and some financial independence.
Her father is devoted to her. He says she has come a long way. He says she can continue to live with him, but he shares Sheena’s mother’s belief that at some point she should live in an assisted living program. He father also wishes she would do things in the community, like theater, rather than being so involved with her boyfriend.
Christine Macros, the ASP counselor, said that Sheena wants to be a normal teenager and has made a lot of progress, but she does not know if she will ever be independent. The school system pays for the four-day a week assisted employment program. Officials think Sheena would get too over-stimulated in a regular job; they say she still requires a lot of supervision and would not have the patience to work a full day. The school is applying for Sheena to be in the 2 percent of adolescents in Massachusetts who receive an alternative state assessment because several times she has failed the MCAS examination required for graduation. Ms. Macros said she does not talk with Sheena's therapist, but does speak with her DMH case manager.
Based on reading her record, and interviews with Sheena and her mother at her mother's home, with her father at his home, with Christine Macros at ASP and with Kathy Casella at DMH, my opinion is that in 2003 and continuing to the present, Sheena has the following needs:
• To learn how to make a weekly budget and daily budgets and adhere to them and to make corrections when she spends more or less than budgeted;
• To increase her ability to take the bus safely by herself, wake herself up and get to school/work on time, and use her free time in at least one independent community activity;
• To improve in her ability to state what she wants and not get stuck in stubbornly insisting on it, but be able to see another person's reasoning, ask for explanations that she understands, and compromise;
• To be helped to stretch her ability to work independently on her job and manage the distractions and not socialize too much and to work longer hours; and
• To improve her communication with her boyfriend, especially when she might give in to things she does not want.
This view of her needs is similar to the perspective of Ms. Macros, and reflects the vocational assessment by the Arc of Berkshire County.
The 1:1 staff person assigned to Sheena should have special training in successful techniques for expanding the skills of young adults with low IQs, concrete thinking, and the processing problems that interfere with Sheena's understanding. The 1:1 should work in tandem with ASP staff and the assisted employment staff. The 1:1 should work with Sheena's parents to teach them techniques of avoiding pointless arguments with Sheena and instead stretching her ability to see two points of view and compromise. Use of a white board at both parents’ homes, school, work and her boyfriend's home will help keep her concrete thinking organized. In addition, as Kathy Casella and DMH pull out of Sheena’s case, DMR should be ready to step in with appropriate service coordination to oversee Sheena’s needs and services.
In my opinion, Sheena’s needs (as set out above) could have been and should now be met with intensive home based services in a pre-adoptive foster home including:
• 1-on-1 behavioral services in the home daily, as well as guidance to both parents;
• Family sessions and couple sessions with her boyfriend to teach listening, direct communication and compromising skills;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, and school coordination and a crisis plan, guided by strong clinical supervision.
ROBERT T.
Robbie is an active, low-functioning 12-and-a-half-year-old boy (DOB 1/23/92) who lives in a crowded double-wide house trailer with his parents, 11-year old twin siblings, a cat, a bird, and dogs they breed for Christmas money. His father, 64, a truck driver who retired on disability after an accident, and his mother, 43, who has been in recovery for several years, also have two older sons, including an 18-year old in the custody of the Department of Social Services who has been at Tewksbury State Hospital for five years. The family makes the 200-plus mile round trip to visit him regularly. Robbie and the twins were exposed to domestic violence and neglect as youngsters and placed in foster care. The parents have worked to sort out their problems, and the family is seeking services that will enable Robbie to remain at home. His diagnoses include dysthymic disorder, ADHD, and mild to moderate mental retardation. Clinicians say other likely diagnoses are pervasive development disorder and prenatal substance exposure. He has had multiple hospitalizations and is medicated to control his behavior; family members are fearful that his outbursts will become more dangerous as he gets bigger.
He and his family would greatly benefit from intensive home-based services that include a thorough assessment that explains his needs and capacity for higher functioning to his parents, school and mental health providers; an in-home coach to instruct Robbie and guide his parents and siblings; and case management to coordinate an array of school and home services including medication management, individual and family therapy, and crisis intervention.
In 1996, Robbie and the twins were removed from the home and placed in different foster homes. Robbie was in foster care 27 months; his regression manifested with speech, toileting and other developmental problems. During his foster care placement, he had a hospitalization at Baystate. He did not adjust well in regular kindergarten and was sent to the Perkins School in Lancaster (11/98-6/00). At age 8, soon after reunifying with his family, Robbie was at home when a fire destroyed it and killed their pets. For an extended time, his father lived with the four children (ages 7-14) in a motel. His mother, who has a long history of substance abuse, had left with another man. Robbie's mother has been home and sober for the past three years, and is determined to keep him at home.
His mother says Robbie is impossible every morning until his medications (Depakote, Atarax, and Risperdol) take effect. She says a similar scenario plays out every afternoon: When he gets home from school, he is usually angry, cursing and starting to be out of control; he takes his medication and in about 45 minutes, he is "fine." His mother was critical of the crisis team, which "never helps and just puts him in the hospital. Usually he just needs a medication adjustment and shouldn't have to go to the hospital." Robbie has had multiple hospitalizations. In April 2003, a month after his mother discharged him from Providence Hospital against medical advice, Robbie was hospitalized at Westwood Lodge because of his increasingly defiant and aggressive behaviors at school and home. The Westwood discharge summary said he was admitted due to "failure at outpatient or partial hospitalization treatment evidenced by clinical instability." He had two subsequent inpatient stays at MetroWest Medical Center (7/3-7/22/03 and 8/2-8/12/03). His parents' anguish over their older son's placement in a state hospital has contributed to their unwillingness to have Robbie hospitalized: "That's not the answer. We want to learn how to deal with him when he has problems."
Robbie has received some behavioral services, but despite his problems – aggressive bizarre behavior, sexually inappropriate behavior, peer relationship problems, and school difficulties – the services have been strikingly lacking in intensity. For several years, he has seen clinicians, primarily at the Massachusetts Society for the Prevention for Cruelty to Children (MSPCC). Robbie's single-page MSPCC "treatment plans" from 7/26/00 to 6/16/03 were almost identical: Symptoms changed little; medication changed little; the services were the same; level of functioning (GAF) remained around 50; there was no variation in diagnoses. Although called a treatment plan, the form simply listed diagnoses, problems, and categories of services. Every six months a request was made for 32 sessions, which works out to an average of one hour and thirteen minutes per week for office-based individual therapy, family therapy, medication and being available by phone to the family and school. For the last two years, Robbie's father has driven him to Greenfield for routine medication checks, and once a month for a brief session with Steven Clark, a social worker. His father was not critical of Mr. Clark, but he does not think that Robbie gets very much from these brief monthly encounters.
In an interview at MSPCC in Greenfield, Mr. Clark said he began seeing Robbie when he was almost 9 and struggling with his mother being in and out of the home. Mr. Clark said he had to do the exact same rituals with Robbie every session. He suggested that Robbie should have been should be diagnosed with Pervasive Developmental Disorder. Mr. Clark commented that sometimes Robbie seems to be in an autistic world. He says when Robbie gets very angry he is usually not verbal, but he will calm down if not pressured. If he is cornered, he will escalate. Robbie responds to a calm, empathic voice, says Mr. Clark. Although no one knows his triggers or whether he could respond differently to them, Mr. Clark suggests that reducing stimulation probably would be beneficial. He also says Robbie would benefit from a skilled staff person who can treat Robbie's communication disorder. He agreed Robbie likely had fetal substance exposure, but did not know how that would change the treatment he should get. Mr. Clark said that Robbie's cognitive capacity is unknown and whether he can learn social skills is unclear. Mr. Clark said he had previously recommended an assessment to see what Robbie is capable of learning. He agreed that his home is over-stimulating and that Robbie cannot keep up with the twins. Mr. Clark worries about Robbie being unsafe as an adolescent who may become angry if other teenagers irritate him. He said a safety plan should consist of a good behavior plan, low stimulation, and steps to avoid escalating. "This family needs a good behavior interventionist and they have never had that," he said. Mr. Clark reported that in the past, Robbie had enjoyed a comfortable relationship with a school staff member who understood him; he suggested that individual time with her would be helpful to Robbie.
Robbie's father said that Mr. Clark is " a nice guy," but due to the therapist's physical disability (he is legally blind), he is unable to drive. For more than a year, Robbie's parents have asked for someone who could do more interactive things with their son. His parents criticized the Tri-City Family Stabilization Team, whose services were initiated after Robbie's last Metro West hospitalization. "They made us sit here while Robbie completely destroyed his room and wouldn't let us do anything to stop him," his mother said. Since then, his parents have removed rugs and furniture from his room, erected new walls he cannot punch holes in, and converted part of the living room into a bedroom for his brother because the boys cannot share a room. In 9/03, the TriCity FST clinician wrote, "Client is in need of care and case management. He would greatly benefit from DMH services such as outreach services. Client is frequently disruptive, aggressive and/or seeking negative attention from adults."
The following month, an assessment by the Child & Family Service of Pioneer Valley described Robbie as having developmental delays, learning disabilities, and angry tantrums. He liked to clean, take walks with his mother, go swimming, bike, play with matchbox cars, and watch videos. He was fearful that his mother would leave home again. "Family seems to need a lot of support and parenting assistance. Previous therapy ended. Had been on a waiting list." The proposed plan to manage risk was basic: " (C)lient given crisis team phone numbers."
In 2/04, the Department of Mental Health recommended case management and outreach services for Robbie. Three months later in 5/04, when DMH staff met with Robbie's mother and school staff to discuss her concerns about restraints in school and keeping him off the bus for his behavior, he was still waitlisted for case management and outreach services.
In the summer of 2004, an outreach worker finally was assigned to work with Robbie once a week. The family considers this young man, Joe, to be the first service that has been helpful. He sometimes eats dinner with the family and is not afraid to take Robbie out to go fishing or get ice cream. They had requested someone with an understanding of special needs and they think Joe is well trained, although "he hasn't seen the real Robbie yet." His father described his frustration in trying to get services for years: "I called every number I could find for mental health and they had nothing and things kept getting worse. If Joe had been here two years ago, it would have been wonderful. He wouldn't have been hospitalized." His mother said she had asked Joe to help Robbie deal with his anger, "to teach him how to express himself without getting so aggressive." They said Joe planned to increase his hours and they hope he can work with Robbie several times a week. "He needs more help than he's getting, but we're glad we have Joe. We would like Robbie to have an activity he can go to after school."
A psychological evaluation in 2002 described Robbie as looking and acting younger than age 10, with unclear speech and unusual sensitivity to noise and smell. His cognitive ability was in the mentally deficient range, and his reading and number skills were still at the age 5 level, with no progress in three years and guarded prognosis for future learning. His adaptive behavior had improved, although he required adult assistance in all areas. He was highly vulnerable to disruptions in his environment and required as much stability as possible. His aggressive behaviors could be managed but depended on external controls. "Just as important as building individual coping skills is providing consistent structure and nurturance in his environment. In fact, without such structure he is not currently capable of maintaining. Ongoing family consultation and support is essential in providing consistency between home and school, especially in managing aggression."
Robbie continues to attend the Walnut Hill Program. A Walnut Hill report in early 2004, when Robbie was a 12-year-old fifth grader whose reading and arithmetic were still at the kindergarten level, stated, "His level of conversational proficiency is limited ... (he) had difficulty attending to tasks and was impulsive and careless in responding ... replied with nonsense words and phrases ... and illegible scribbles ... the use of hands on materials in the classroom is beneficial ... Difficulty with retention of new material requires constant repetition and practice. Written language deficiencies should be addressed in the content areas through the use of multiple instructional modalities, assistive technology, modeling and curriculum modification. An adaptive skills curriculum is necessary for Robert to achieve the independent living skills he needs for a productive future." His 3/04 Walnut Hill IEP said Robbie loves animals, likes to use his hands and the computer, loves music and swimming. He could tell time, dress himself and do simple addition/subtraction; occasionally he played with peers. His long list of accommodations included verbal prompts, don't over-stimulate, consistent structure, simple instruction, visual aids, rehearsal, keyboard for writing. This year, his mother said he likes doing math on the computer, but continues to struggle with first grade reading. She says she has asked to observe in the classroom, and has not heard back yet from the school. Although she was given a daily school report in the past, she has asked but not yet received one this year.
His mother says the biggest challenge is that all three kids at home need individual attention and there is not enough to go around. She feels guilty that many of the problems Robbie and his older brother have are her fault. "He will probably live with us the rest of his life. We don't expect miracles. We don't know if he'll ever be able to drive or have a little job packing groceries." She said she had to learn on her own how to calm him down. "We have no one to help us learn. We came up with our own discipline – five minutes in his room. I wanted a class on proper methods of restraint, but there isn't one. I worry all the time, even though I'm taking antidepressants."
His father is afraid someone will get hurt. "When he throws rocks, it scares me. I'm afraid to put him in the car when he's in crisis. My back was broken so how much can I do?" His father hopes to talk to Joe about how to handle Robbie before there's a crisis.
During the interview, Robbie snuggled with his mother and frequently interacted with her. Often his speech was difficult to understand and she translated. She set limits numerous times, but usually gave in because Robbie pestered her (it is possible this was to keep peace during the interview). He did not respond to "no" and kept asking her to light a special candle, let him go into the room where the dogs were locked up, and let him keep watching a violent TV show. When he got stuck on something he wanted, she was clever at teasing him out of it. When she described breeding their dogs and selling the puppies for Christmas money, Robbie said one of his only complete sentences in two hours: "Dogs don't listen to nothing I say." He crawled around on the floor to chase the cat, but was gentle and said, "He loves me."
Based on reading his record, interviewing his parents and observing Robbie at their home, and interviewing his therapist at MSPCC, my opinion is that in 2003 and continuing to the present, Robbie has the following needs:
• To have everyone who works with Robbie (his family, school staff, home-based and other providers) understand his specific brain limitations (probably due to fetal substance exposure) and the techniques that will help him compensate for them (for example improving sequencing, understanding consequences, learning from his mistakes, repetition, simple instructions, visual instructional aids);
• To have everyone who works with Robbie (his family, school staff, home-based and other providers) understand how all the losses he has experienced have made him get easily anxious and how to help him relax himself;
• To have everyone who works with Robbie (his family, school staff, home-based and other providers) understand how being over-stimulated and too much noise agitate him and make him less able to pay attention or stay calm;
• To be re-directed by each adult who works with him--they must avoid saying "no" which makes him react because of his poor sequencing and his anxiety;
• To have everyone who works with Robbie (his family, school staff, home-based and other providers) understand that he has to have consistent structure and nurturance;
• To learn to tell himself what to do when he gets angry instead of requiring external controls; and
• Not to be separated from his family again, which will be confusing and frightening.
A strong home-based provider would take the results of a comprehensive assessment, discuss and explain them to his family and school, and reach agreement about Robbie's needs and what each person would do to meet them. This would be a process that would help everyone living and working with him know his capacity for academic, social skill, and self-regulation improvement.
A 1:1 coach skilled in improving adaptive functioning of delayed children working under the supervision of Robbie's therapist would do activities and provide teaching in the home so he becomes higher functioning. The coach would teach him sequencing and how to follow instructions. The coach would help him become good at a hobby or athletic activity (to improve his self-esteem), give him opportunities to relax, improve his social skills, and begin to develop more self-sufficiency. The coach would teach him what to do when he gets angry. The coach would help his family use repetition, simple instructions and visual instructional aids to reduce his anxiety and to provide consistent structure and nurturance. The coach would help his family prevent him from being over-stimulated. The therapist would develop a safety and crisis plan with his family and coach and specify an on-call schedule for responding in crisis.
In my opinion, Robbie's needs could have been and should now be met with intensive home based services including:
• A thoughtful assessment of how he could be supported to have higher functioning;
• 1-on-1 behavioral instruction in the home;
• Family therapy and in-home behavior management guidance for his parents;
• Medication management and consultation; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, and school and work coordination and a crisis plan, guided by strong clinical supervision.
CHELSEA T.
Chelsea is a 14-year-old girl (DOB 3/19/90) in the custody of the Department of Social Services who says she has had 34 placements since she was six years old. “I have never been a wanted child,” she says. She has been in residential settings for three years. She has contact with relatives who are seen as being unable to keep her safe, but since she was 10, no attempt apparently has been made to wrap services around them or find another family home for her. She was in two temporary specialized homes without sufficiently intensive services designed to meet her needs.
In my opinion, Chelsea needs a permanent, safe home with home-based services including intensive in-home guidance for her caretakers in order to provide unconditional care. A skilled trauma treatment therapist also would be necessary to assist her, and to guide the family members.
Chelsea was first removed from her family at age 6 after her substance-abusing parents separated and she was exposed to continued domestic violence and neglect in her father's home. She remembers liking her first foster mother "who was supposed to adopt me, but then she ran away." A 1997 family assessment concluded, " Chelsea has not received adequate clinical intervention to support her, assist her to explore her feelings and behaviors [including] her inability to trust almost any grownup." The assessment stated her acting out behaviors were due in part to multiple separations and losses, and called for greater coordination of services. She and her brother were unsuccessfully reunited with their mother three times, and during one of these reunifications, Chelsea, then 9, reportedly was sexually abused by a neighborhood boy. According to DSS staff, two days before Mother's Day in 1999, their mother said she could no longer manage Chelsea and her brother and dropped them off at the office.
Chelsea's first psychiatric hospital admission, at the Providence Acute Residential Treatment program in May 1999, reportedly was prompted by her reaction to her mother's assertion, "I don't want to see your ugly face anymore." After one month, Chelsea was discharged with diagnoses of separation anxiety, depression and PTSD; the discharge plan called for office-based outpatient counseling with the same therapist she had been seeing for more than a year.
A July 1999 psychological evaluation concluded: "Chelsea is unlikely to change unless all the adults in her life collaborate on a unified parenting system." Citing her age and developmental pathology, the evaluator suggested Chelsea would maintain her allegiance to her parents, " and never accept the parenting efforts of others."
Chelsea was stable for a year in a foster home that she still misses; she became jealous of the foster parents' grandchildren and was aggressive toward them. Her foster mother, who had not agreed to adoption but wanted Chelsea for the "long term," was unable to manage her sexual behavior. Chelsea subsequently experienced multiple foster home placements. In 2000 she was placed in a specialized foster home (mentor home), but had increasingly high-risk behaviors. A lengthy adoption assessment by Brightside in 7/00 repeated earlier themes: Chelsea "can't escape the loss of her parents, … is fighting off her depression by trying to ignore her inner turmoil and acting out with aggression, and [is involved] in sexual behavior to distract from emptiness." The report concluded that Chelsea was not ready for adoption, and " won't stabilize until she resolves her inner conflict over her family."
In 2001 she used inhalants and was accused of soliciting sex from boys. She was hospitalized at Providence in May 2001 and was placed in a foster home where there was a firesetting incident. This led to an assessment that concluded she was "very traumatized (not only by exposure to domestic violence and substance abuse, but also a series of sexual victimizations starting at age 3) and highly emotionally reactive. Her judgment under stress is poor, but firesetting and drug abuse when she is overwhelmed with stress gives her emotional relief. She requires consistent, trusting relationships and attachment. Trauma work is an obvious need."
Although Chelsea had a diagnosis of PTSD, ever since age 9 she has consistently been responded to as an oppositional child. In 8/01 she was placed at the Key Program in Pittsfield because she "required highly specialized therapeutic care to recover from past trauma." Her problem list at Key included symptoms of trauma: aggression, family neglect, depression, sexually inappropriate behavior, substance abuse, firesetting, suicide ideation, sexual abuse victim. However, her treatment plan did not address trauma and instead focused on behavior control in order to live in a group home: (1) develop communication / problem solving; (2) improve relationships with adults; (3) share in cleaning common living space; (4) increase communication with parents; (5) practice good nutrition; (6) understand how others are offended by words/behavior; and (7) accept reasonable consequences when rules are broken. By the end of 2002, Key staff said Chelsea had to improve her anger management and problem-solving skills before she could move into specialized foster care. But she became more depressed due to her involvement in "love triangles," lost weight and was put on an antidepressant.
In 4/03 Chelsea was placed at Valleyhead in Lenox. Valleyhead's initial treatment recommendations were for a "structured, consistent, nurturing therapeutic milieu" and help from adults: clear rules, positive reinforcement, individual therapy and journaling, all of which could have been put in place in a carefully selected foster home with intensive services for her and the foster parents. Her need for permanency and trauma treatment and integrating past attachments into her life did not stand out in that assessment at age 13, seven years after DSS came into her life.
Chelsea's 2/04 Valleyhead treatment plan was unusually thoughtful for a residential provider. But she still failed to make progress after nearly a year. Her refusal to attend school and her sexual acting out behaviors – flirting and kissing residents and getting depressed when rejected – were seen as "stubborn and oppositional," although it is unknown how a teenager institutionalized with other behavior-disordered youth is supposed to have "healthy relationships." Her treatment plan did not mention recovery from trauma, particularly her need to recognize how her self-blaming from the past has carried into a habit of self-sabotaging in the present. She was not being helped to understand that her loyalty to family members unacceptable to DSS was the primary reason she was in a residential program.
Her Valleyhead IEP was also strong: It was positive about her progress, described her emotional obstacles to learning, and had clearly stated academic goals. At age 11 she was reading and doing math at the sixth grade level, and in the 12/03 Valleyhead educational evaluation when she was 13 in grade 8, she scored in the average range of her grade level.
Bill Simons, a DSS supervisor who has known Chelsea for years, said "her life is recovering from what happened to her before age 5." He said she had a strong attachment to her parents, and explained, "When her mother became unavailable, she saw her father as a knight in shining armor who DSS keeps her from being with, and consequently, she was unable to tolerate a foster home." When asked whether Chelsea had seen a skilled trauma therapist, Mr. Simons responded that there are not enough well-trained therapists. "There was no way for her to be safe with her mother or father and no trauma therapy funded by Medicaid to help her with her attachment problems," he said. " A lot more is necessary for kids like Chelsea who need specialized treatment for loss and trauma."
Mr. Simons continued, " It is much harder to get people to go to therapy than take therapy to the family, but there are not enough therapists to do outreach and Medicaid does not pay enough for someone to make a living at outreach." He said he had never seen specialized treatment, such as an in-home trauma treatment therapist, " wrapped around a foster home," and added, " Chelsea still has a good phone relationship with two foster parents who had a lot of empathy but she couldn't let them parent her. She wanted something she couldn't have."
Mr. Simons described two significant problems that have been troubling Chelsea for years: She has "real basic identity issues" and she has sexually reactive behavior because as a child she experienced sexual behavior by adults. She is bright and works hard, but he believes she had more trauma that has not been revealed and thus, is just at the beginning of treatment. He was sorry she did not succeed at the Key program, but is hopeful that Valleyhead, because of its skilled staff and low staff turnover, will help Chelsea.
Chelsea thinks the only feasible next step for her is to go to Valleyhead's group home, but added, "I have to learn how to have healthy relationships first." She does not want to live in a group home, but thinks she has to spend a year there before she will be considered for a foster home. Chelsea wishes her favorite Valleyhead staff person would adopt her. She wishes she could live with her father's ex-girlfriend, but he is opposed to that. Chelsea wishes her father would visit more (family therapy at Valleyhead stopped because he did not attend the sessions). She had seen her brother recently at her father's, but "all we do is fight." DSS has told her "the plan is not to be reunited with her family, for whatever reason." She says she was taken away because her "parents were incapable of being parents." She thinks her father, at age 36, is getting more stable living with his mother and starting a home-building business. Her aunt and uncle live on the same property and she would like to see them more, but says her grandmother does not accept her because of her past behaviors.
Chelsea said that she has two friends at Valleyhead who help her not to cut herself, but in general she finds the residents and staff in the program "too negative." She loves learning but says the Valleyhead School is boring. She says her unwillingness to eat is that "food is the only thing I have control of here." Her best friend from before she was placed lets her know she is a wonderful person. But her Valleyhead girlfriend lies to her and dates someone else, and that hurts her. Chelsea recognizes but does not understand why she chooses harmful relationships. Her biggest frustration is that she was supposed to be discharged to a foster home last year, but has to do well for six months first. " I can't do that," she says. " I get stressed and depressed and hold everything inside and then go downhill. I warn them I feel it coming on and they say it's up to me to keep it from happening. I ask for help, but I don't trust." Chelsea wants to have a foster home that is loving and not too controlling and will not give up on her, where she has her own room, helps take care of younger children, has friends, gets help to say "no" to drugs and bad relationships, and is allowed to work in a clothing store.
Her therapist at Valleyhead said Chelsea requires residential care because of her risky sexual behavior: "She can't be trusted not to sneak a kiss." She says that Chelsea does not recognize her need for love comes from her mother's abandonment. Chelsea makes poor choices in people, says her therapist, and must learn that "her head has to drive her heart." Her therapist hopes that relationships with staff and positive friends will make her like herself without needing a girlfriend. Academically, Chelsea could manage the local public high school, except for the dating problem, which, according to her therapist, she is not committed to stopping. Asked about having an aide in school to help with better decision-making, her therapist said that would be a big funding issue. She doubted the school system would incur the costs, and suggested that Chelsea would reject the stigma.
By the time she was 7 and had been in care a year, Chelsea's significant trauma and the necessity of more than infrequent outpatient counseling had been identified. Her difficulty forming attachments, given her maltreatment, repeated rejections and loyalty to her father, were recognized after several failed foster homes. Her emotional needs were identified again at age 10 by an adoption assessment. But DSS ignored these assessments, placing her in group care instead of wrapping intensive mental health services around a permanent home for Chelsea. National practice standards require permanency and DSS has made little effort in eight years to help Chelsea be able to tolerate an enduring attachment outside her biological family. Her placement at Key could never have met her needs, as demonstrated between the mismatch between her identified trauma symptoms and their goals for behavior control. To place a child diagnosed with PTSD in a large group home with inexperienced staff without trauma treatment was contrary to nationally accepted child welfare and children's mental health practice.
Based on reading her records and interviewing Chelsea and her therapist at Valleyhead, as well as Bill Simons at DSS, my opinion is that in 2003 and continuing to the present, Chelsea has had the following needs:
• To understand the connection between her hunger for love in the present and her past abuse and rejection, and accept that she cannot get the love she wanted as a child and instead seek love that fits her now;
• To learn new self-talk that what happened to her was not her fault and she is lovable;
• To take charge in positive ways so she is not so controlling that people do not like her;
• To learn not to expect rejection and how to have a romantic relationship that supports and does not harm her; and
• To be in a challenging school program that leads to college.
This view of her needs is similar to the perspective of her therapist at Valleyhead.
It is a priority for Chelsea to have a permanent home that can keep her safe. Her record does not contain an assessment of her father's parenting skills, and according to Chelsea he has stabilized since he was involved with DSS. A thorough assessment of her family's (her father, grandmother, aunt and uncle) capacity to meet her needs, with in-home supports, should be done. Because of years of struggle with DSS, her family will probably not welcome such an assessment, which should not be mistaken as a disinterest in Chelsea: A home-based service provider should engage Chelsea and her family in a process of seeing their strengths, understanding Chelsea's needs, and considering what it would take for them to meet her needs. If her family appears unable to be supported to meet her needs, a pre-adoptive (or guardianship) home should be specially recruited for Chelsea with a skilled foster parent. If she is placed, Chelsea will require considerable assistance to understand why her family cannot meet her needs, and accept them as a family she enjoys visiting but does not live with. She will need help managing her feelings of disloyalty so she can attach to another permanent family. Either her family or the foster family will require intensive in-home guidance in order to provide unconditional care. While Medicaid is not responsible for providing the foster home, without intensive home-based services, most biological families or foster homes would not be able to help Chelsea recover from her past. Chelsea is unlikely to be successful in a group home placement or a specialized foster home with only outpatient therapy or a few hours a week of outreach services.
Chelsea's caretakers, at home and in school, will have to be well trained to gain her trust in order to give her the experience of a steady, positive relationship. They will have to be prepared for Chelsea being needy and then behaving negatively to avoid getting close for a long time. Without getting into power struggles with this child who needs to be in control because she was so powerless when she was repeatedly victimized, her caretakers, at home and in school, will have to be taught how to help her have a normal social life without getting repeatedly rejected or involved in self-harming behaviors.
A skilled trauma treatment therapist working individually with Chelsea and her birth/foster family would teach her: (1) to separate her past trauma from the present and not blame herself for it; (2) to define love that meets her needs now and accept that she cannot get the love she wanted as a child; (3) when she gets "stressed and depressed," instead of "holding it all in" or hurting herself, to build news skills in comforting herself or asking for help; and (4) how to use self-talk to improve her view of herself and her confidence that she is lovable. The therapist would guide her family in reinforcing her new learning and endorse Chelsea's strengths even when she continues difficult behaviors. In addition, her therapist would provide clinical supervision to her coach. The therapist would also develop a crisis plan with the family and coach and specify an on-call schedule for responding in crisis.
A 1:1 coach in the home working under the supervision of Chelsea's therapist would: (1) remind her to compare every prospective friend and romantic interest to her definition of the love she needs now and help her see if instead she is seeking the love she wanted as a child; (2) help her practice skills in self-soothing and getting assistance before she gets depressed; (3) teach her how to be in charge without being overly controlling; (4) when she is feeling needy, show her how to ask for nurturing from her family or other positive people and conquer her fears of trusting others; and (5) encourage her use self-encouraging self-talk.
In addition, the coach would provide daily support to her family/foster parent on unconditional care, a focus on the positive, and avoidance of power struggles while keeping Chelsea safe.
In my opinion, Chelsea's needs could have been and should now be met with intensive home based services in either her biological family's home or a pre-adoptive foster home including:
• 1-on-1 behavioral services in the home (daily, including weekends);
• Individual therapy, family therapy and in-home behavior management guidance for her family/foster family; and
• An active interagency team with case management, 1-on-1 behavior services, family involvement, and school coordination and a crisis plan, guided by strong clinical supervision.
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