COFAR, Inc.
-342900114300 COFAR, Inc. THE MASSACHUSETTS COALITION OF FAMILIES AND ADVOCATES 3 Hodges Street, Mansfield, MA 02048Telephone: (508) 339-3379 Fax: (508) 339-5034 August 2019Issues of concern to individuals, families, and guardians in the DDS systemI. Privatization of DDS-funded care is reducing choice in care DDS routinely fails to offer the Wrentham and Hogan developmental centers and state-operated group homes as options for persons looking for residential placements. The Home and Community Based waiver of the Medicaid Law (42 U.S.C., Section 1396), requires that intellectually disabled individuals and their guardians be informed of the available “feasible alternatives” ?for care. In addition, the?federal?Rehabilitation Act (29 U.S.C.,??Section 794) states that no disabled person may be excluded or denied benefits from any program receiving federal funding.DDS has closed all but two developmental centers or ICFs since 2008, and continues to misrepresent those facilities as institutional even though they employ state-of-the-art care and provide residents with cottages and other home-like options.There has been a decline in the census at WDC and Hogan since Fiscal Year 2012, and a decline in the census in the state-operated group homes since Fiscal 2016. The combined census at WDC and Hogan dropped from a high of 478 in Fiscal 2012 to 408 in Fiscal 2018. The census in the state-operated residences dropped from a high of 1,153 in Fiscal 2016 to 1,119 in Fiscal 2018 (See graphs below)Source: DDSThere is an imbalance in state funding of DDS programs and services, with a priority placed on privatized care at the expense of state-run care. When adjusted for inflation, funding appropriated for corporate provider-operated group homes increased from $843 million to $1.19 billion, or more than 41%, between Fiscal 2012 and 2018. Funding for state-operated group homes has remained relatively flat in that time and appears to have begun to decline since Fiscal 2016. (See chart below)State-run programs could be expanded to serve an unknown number of people waiting for DDS services. That number is not known because DDS doesn’t officially acknowledge a waiting list. ?The Massachusetts Developmental Disabilities Council?has cited a 2010 survey indicating that some 600 people?were waiting for residential services in the state, and up to 3,000 people were waiting for family support services.After DDS closed all remaining sheltered workshops for persons with developmental disabilities in 2016, an unknown number of those people have been left without meaningful work activities in their Community Based Day Supports (CBDS) programs.DDS has been unable to find suitable work opportunities in so-called integrated or mainstream employment settings for an unknown number of DDS clients.II. ICFs and state-run programs are being replaced by a poorly overseen system dominated by corporate providers to DDSThere is a hidden bureaucracy of executives of corporate providers to DDS that is costing the state almost $100 million per year. This is one reason that studies have shown no clear savings in privatizing human services. (See COFAR 2015 survey at: ) Direct-care workers in the privatized residential system lack adequate training, pay, and benefits, and have a high rate of turnover. (See the State Auditor’s May 8, 2019, report concluding that higher state funding has resulted in surplus revenues for providers, but that those additional revenues have not translated into higher direct-care wages. ()There is a lack of adequate financial oversight of the privatized system.III. Abuse and neglect are serious problems in the provider-based DDS systemWe receive many more?calls about neglect, abuse, and eviction of residents from corporate-operated group homes than from state-operated group homes or developmental centers (ICF’s).?Corporate providers and DDS itself did not report 58 percent of “critical incidents” to the Disabled Persons Protection Commission as required by state regulations, the Inspector General for the U.S. Department of Health and Human Services?reported in 2016. (See: )The DPPC does not have the resources to do independent investigations of abuse and neglect. The DPPC refers most of its cases to DDS, which results in a conflict of interest since DDS funds or operates those programs. (See: )The Home and Community Based Services (HCBS) waiver system has looser standards for group homes than does the Intermediate Care Facility (ICF) system, yet almost all ICF-level facilities have been closed in Massachusetts. (See: )IV. Families lack rights and protections in the DDS-probate court systemDDS often sides with corporate providers when families raise abuse or care issues.Both corporate providers and DDS have shown a pattern of intimidating and punishing family members and guardians who raise issues and concern about the care of their loved ones in the system. Corporate providers often retaliate against family members and guardians by barring them from access to the group homes and ultimately attempting to evict their loved ones from the residences. (See: )Probate judges often bypass family members and select DDS-recommended attorneys as guardians. This is why it is critically important to pass H. 1415, a bill that would require probate judges to presume that parents of DDS clients are the proper guardians for them. There is an inherent conflict of interest in having DDS recommend and pay court-appointed guardians of persons in the Department’s care.The DDS guardianship system lacks financial transparency and oversight. (See: )History of care of the developmentally disabled in MassachusettsIt is important to place the present-day state of affairs within the DDS system in an historical context. Until the early 1990s, the system was dominated in Massachusetts and other states by large, poorly run institutions. Those facilities were grossly unsanitary and were essentially warehouses of abuse and neglect.That all changed starting in the 1970s when federal courts around the country issued consent decrees in response to class-action lawsuits, and required substantial upgrades in care and conditions in the existing institutions. At that same time, a new system of smaller, privately run but state-funded group homes began to appear as residential options for many of the former residents of the larger institutions. A network of state-run group homes was created as well in Massachusetts.During the past 20 years, the privatized group home system has overtaken and surpassed both the state-run group home network and the large facilities both in terms of state funding and number of residents. All but two of the large facilities have been closed in Massachusetts.But the new system of thousands of dispersed group homes has its own set of structural problems. This system that replaced the large, centralized facilities has been much harder for the state to monitor with regard to care and conditions and with respect to the finances of the nonprofit agencies that directly operate the residences. In addition, the group home system operates today under?a waiver of stringent federal Medicaid regulations?that still govern the remaining large facilities.The growth of the corporate provider system has also resulted in the creation of a largely hidden bureaucracy of highly paid executives of those nonprofit agencies. These executives?have seen their own levels of compensation rise?as the wages of direct-care staff have remained stagnant or failed to keep pace with inflation.Due to the combination of poor oversight and relatively low pay and training of direct-care staff, the privatized?group-home system has for some time exhibited many of the warehouse-like characteristics?of the former institutions prior to the 1980’s. In addition to?failing to address problems of abuse and neglect, the group-home system has not been able to provide promised?openness and community integration. Yet, in Massachusetts, the private providers have established themselves as a powerful lobbying force on Beacon Hill and have essentially captured the system’s managerial and regulatory agency, DDS, which has continued to press for more and more privatization of services. The result today is a?growing imbalance in state funding?of DDS services. A priority has been placed by successive administrations and by the Legislature in Massachusetts on privatized care at the expense of state-run care.In addition to worsening the problems of abuse and neglect, the funding imbalance has reduced the availability of state-run services as a choice to a growing number of people waiting for residential care and placements.We believe that both state-run and provider-run care can coexist in Massachusetts and together can effectively meet the needs of all of the clients in the system and those waiting for services. In order to maintain both systems and to ensure they function effectively together, reforms of the DDS system are needed.Needed Reforms to the DDS systemNeeded reforms to the DDS system include:Increased funding for state-operated programs.A statutory requirement that DDS disclose and offer state-run group homes and developmental centers as options for persons seeking residential care in the system.Increased transparency regarding care and conditions in provider-run group homes. (Passage of H.93, which would require DDS to provide easily accessible comparative information about group home providers on the department’s website.Increased resources for the DPPC and investment of the agency with sole authority to investigate abuse and neglect. Changes to the DPPC’s regulations to ensure public disclosure of its completed reports. Increased financial oversight of the corporate provider system and the DDS/probate guardianship system.Establishment of a $20-per-hour minimum wage for direct-care human services workers.Passage of H.101 establishing a registry disclosing the names of individuals who have had serious abuse or neglect charges substantiated against them.Establishment of a registry of DDS provider agencies with more than a threshold number of employees who have had serious abuse or neglect charges substantiated against them.Passage of H.1415 requiring probate court judges to presume that family members are suitable guardians of persons with intellectual and developmental disabilities.The provision of free legal assistance to family members and guardians who been barred from contact with their loved ones in the DDS system or who have otherwise faced retaliation from the agency or from providers.The provision of free legal assistance to family members whose guardianships are challenged by DDS.Passage of legislation requiring that meaningful work activities be provided to DDS clients in community-based day programs.A policy statement by DDS that the Department will make every effort to comply with the federal Developmental Disabilities Assistance and Bill of Rights Act (PL 106-402), which states that “Individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive, including choosing where the individuals live from available options…”Improvements in the inspection and licensing process of corporate-operated group homes. ................
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