NYSILC



New York State Independent Living Council, Inc.(NYSILC)Covid-19 Report:New Yorkers with Disabilities Critical Needs SurveySeptember 2020The New York State Independent Living Council, Inc. (NYSILC) is an independent, not-for-profit, federally mandated state council with the primary responsibility to jointly develop, monitor and evaluate the three-year Statewide Plan for Independent Living (SPIL). NYSILC operates separately from any New York State agency and is authorized to perform the functions outlined in section 705 of the Federal Rehabilitation Act.I. IntroductionThe first confirmed case of the Covid-19 Pandemic appeared in the United States on January 21, 2020 in Washington State. On March 13th, the Federal Government declared a national emergency. Events and actions across the country escalated quickly, with New York City closing schools on March 15th and New York State ordering the closing of all non-essential businesses on March 20th. By the end of March, New York State had almost 60,000 confirmed cases. Many New Yorkers, especially vulnerable populations, would be confined at home until at least June 8th, when New York State ordered the first phase of re-opening. At the time of writing, New York State has experienced almost 450,000 cases of Covid-19. While the epicenter of cases was initially New York City and its surrounding areas, many parts of the state are experiencing localized outbreaks occurring because of social gatherings, community spread in hotspot zip codes, or college semesters re-starting.The purpose of this survey was to examine the critical needs of New Yorkers with disabilities during the initial phase of Covid-19. Supporting articles and research inform us that people with disabilities are a significant segment of the population and that they are also at increased risk for worse outcomes during emergencies, including (in particular) Covid-19. A variety of factors account for this situation, including limited involvement of people with disabilities in emergency planning, lack of or insufficient access to information/communication to vital services, existing health disparities and lack of accommodations that limit access to health care during the pandemic. The risk is even greater for peers living in congregate care facilities and for racial and ethnic minorities. In the United States and worldwide, infection rates are 3 times higher and death rates 5 times higher in predominately Black/African American counties versus predominantly White counties. Disproportionate results have occurred for the Latinx and American Indian communities as well, with the situation emanating from health care disparities and structural racism. Sources identify the need to build health equity to eliminate these barriers.II. Executive SummaryThe New York State Independent Living Council, Inc. (NYSILC) conducted a critical needs survey early in the Covid-19 Pandemic to assess the concerns and needs of New Yorkers with disabilities. We report findings from 549 New Yorkers who self-identified as people with disabilities. One unique subgroup was identified and discussed later in the report. Overall, the survey identified several key challenges to the medical community, community support organizations, and state and federal governments in providing services during a pandemic of this scale. The overwhelming concerns identified by respondents included loss of routine, loneliness, loss of income, and the inability to access medical and mental health services. The top recommendation is a “call for action” to the various statewide groups most impacted by Covid-19. These groups must mobilize action and advocacy to facilitate systems change related to the issue.ThemesEmotional and Physical IsolationMost survey respondents discussed challenges about being alone, isolated, cut off from friends and family, and thrust out of their personal daily routines. Respondents often utilized the Other answer to talk about “boredom,” “severe isolation,” the “need for home visits to resume,” “social and emotional isolation causing stress on overall health including physical health,” and many similar issues.Many respondents experienced the loss of their day programs, counseling, or support groups. The disruption of regular routines, loss of social engagement outlets, and lack of ongoing support networks (e.g. behavioral health and addiction support groups and services) proved extremely taxing.Personal Safety and SecurityCommon themes throughout the survey included several ongoing fears around Covid-19, such as concerns about the ability to work or go to school safely, experiencing trouble finding and receiving Personal Protective Equipment (PPE) and other protective equipment, and the pervasive fear of becoming sick.Respondents did not feel that they were appropriately educated about the virus and many felt they needed more information.Respondents did not feel that the government had the situation under control. They expressed concern that health care systems and providers were not safe places for them, or that the general population did not take the virus seriously/did not do enough to protect one another by wearing masks.In addition to key disability concerns such as personal attendant care, transportation, group homes/congregate care, and nursing homes, many respondents mentioned concerns related to supplies and PPE.These factors contributed to the isolation and loneliness felt by the majority of respondents as they stayed at home to be safe from Covid-19.Work, Income and Housing Insecurity ChallengesThough the majority of respondents (71%) did not identify as losing their jobs or having their hours diminished, many respondents noted concerns about their parents, spouse, caretaker, or other family member losing a job or experiencing work insecurity. Respondents expressed concerns about not yet receiving the Federal Stimulus funds and being unable to go to their place of work, buy food and essential supplies, or pay bills and taxes. Coupled with work and income challenges, respondents were concerned with housing insecurity. Other concerns included being isolated, needing to isolate/quarantine from family members within a household, and contracting the virus and bringing it home to housemates.SchoolMany respondents expressed concerns with continuing their education during the pandemic, including challenges of transitioning to remote education (college, law/graduate school, high school, continuing education) or schools closing altogether, loss of direct instruction, and loss of the social and extracurricular activities surrounding school exacerbated the issues. The loss of special education programming was identified as a key issue, along with a variety of related concerns.Medical CareThe complete loss or changes to ongoing medical and mental health care was a pervasive theme among the respondents. Many experienced the closing of their doctor’s offices, a reduction in services provided to them, or the fear or inability to go in-person because of the risk to themselves. Respondents reported their in-home health aides were not visiting in-person; some reported needing additional help in the household; still others experienced significant delays in scheduling medical appointments. Virtual counseling and support were not a viable option for some participants.Limited opportunity for cross analysisFor the most part, data analyses did not reveal statistically significant needs or concerns regarding Covid-19 across respondents’ demographic characteristics. This could be due to the statewide imbalance of the survey (more participants upstate versus downstate) which also had an impact on the racial, ethnic, and other diversity of respondents.One exception relates to respondents who stated that “I do not need any additional services at this time” and their subsequent selection of statements about the coronavirus that they believed to be true (respondents were invited to select all that applied). In particular, respondents who did not express need for additional services were disproportionately white (82%), males and were the least concerned with the impact of Covid-19 on people of color and those with underlying conditions (43% as compared to 53-64% for the other respondents). Although this subgroup was a minority (65 individuals or 12% of the total respondents), this finding raises important ethical and social questions about self-preservation and empathy towards others during a pandemic. Future research can explore these issues in greater details.Lessons Learned & RecommendationsKey lessons learned include: Routines Many respondents noted the Covid-19 pandemic disrupted their routines and daily lives. Support service organizations could assist clients with identifying measures to replicate or replace some of their daily routines during emergencies. These may include transitioning of support groups to online formats, expanding the accessibility to outdoor events and activities, and providing remote or in-person support for individuals to exercise or be active during isolation or quarantine. Medical CareThe loss of ongoing medical and mental health care at the beginning of the pandemic was a significant challenge for respondents. The medical community has transitioned out of necessity to more telemedicine due to Covid-19, but efforts to ensure broader accessibility and accommodations to enable a widespread use of the system among people with disabilities is necessary. Particular attention should be given to those with mobility issues and rural residents facing long travel times, regardless of the pandemic.PlanningLocal organizations should be conducting After Action Reports (AAR) to better react and prepare for future emergencies. An AAR is any form of?retrospective?analysis on a given sequence of goal-oriented actions, as part of a performance evaluation and improvement process. After Action and tabletop exercises are simple and cheap ways to identify and correct any deficiencies. Many actions and changes can be utilized across different types of emergencies - local and national. For instance, Zoom meetings can be used to check in on consumers during severe weather events. Zoom is presently recognized within the disability community as an accessible meeting platform. Telecommuting can be utilized on a more regular basis for consumers with childcare or mobility issues, as well as for program staff to maintain relationships with their consumers during times where they are limited by travel or personal munication Respondents were consistently concerned with knowing what was happening and how it affected them personally, both in medical and other realms of life. There is urgent need for assuring timely information about Covid-19 that is accessible for people with various abilities, including the status of the pandemic and testing. Better communication from their support providers and individual action plans would help connect individuals with disabilities with necessary information.Better communication from the state on employment and medical benefits is needed to reduce levels of anxiety and concern. Support organizations could also tailor messaging from the State to individuals and their specific situations. Navigating State programs is challenging without a pandemic. Providing more tailored services and communication on changes and additional benefits would greatly assist respondents.SocializationMany of the respondents reported just being physically and emotionally alone. While this was early in the pandemic and groups were just forming with “Zoom” events and meet-ups, these are important resources to use in the future. Many organizations across the country had to adapt on the spot to move to remote work, learning, medical treatment, and support services. These lessons learned and changes can be used for non-COVID-19 events and activities to supplement in-person events.The top recommendation is a “call for action” by the various groups most impacted by Covid-19: Biracial Indigenous People of Color (BIPOC) and individuals with underling conditions (i.e. people with disabilities). The most effective way to address the themes and lessons learned from this survey is to substantially increase statewide groups engagement in grassroots planning and advocacy and utilizing the combined efforts and resources in a unified agenda that seeks meaningful systems change.The suggestion of grassroots advocacy is certainly not novel. While the tools (platforms) to implement them improve frequently, factors such as time, resources, and human behavior make advocacy more complicated. Grassroots efforts depend more on each person or group’s unpredictability and freedom of choice versus an organized advocacy campaign with leadership required to sustain such an effort. Advocacy that is grassroots, inclusive, and involves as many stakeholders as possible can create a powerful voice that can lead to change.Going forward, a process needs to be developed to structure the call for action for the impacted groups. Leaders from the groups must emerge to provide initial direction to get the campaign off the ground. Future leadership can be addressed as the group expands and moves forward with an agenda. A logical first step is to seek interested groups, individuals and state officials to participate in a dialogue and develop a disability-tailored campaign that addresses the educational needs of both people with disabilities and other stakeholders (healthcare providers, support services, etc.). Sign up will be continuous, looking to achieve the greatest diversity and broadest stakeholder representation possible. Some more concrete steps are:Hold local (virtual) focus groups for feedback to discuss the major issues related to Covid-19 with the goal to come up with an agenda/action plan. Be sure to include other modes of providing input that reduces barriers (i.e., lack of Internet access, lack of communication access, a need for alternative languages). Make decisions about regional forums (given state differences) and a state summit to discuss the major issues related to Covid-19 with the goal of coming up with an action plan/agenda. Devise a process to identify support for common issues (i.e., emergency preparedness/planning, address and build health equity for systemic racism). Identify other key issues to address. Create an advocacy plan to prioritize issues, resources, and to document efforts and progress.The recommendations above are built on a successful experience of a dedicated group of deaf, disability, and legal advocates, who pressured Governor Cuomo in the spring of 2020 to include an American Sign Language interpreter on screen during Covid-19 briefings. While this success demonstrates a single issue, a shared agenda and collective power of the combined groups working together can achieve greater equality and inclusion for all other disability stakeholders. The next sections of this report provide: Detailed responses to the survey questions.Respondents’ demographic characteristics.Additional information about the survey’s methodology.III. Findings from COVID-19 Survey QuestionsSix questions in the survey directly addressed Covid-19 and individual needs and concerns. Across the board, individuals were significantly concerned with becoming infected with Covid-19, health care and/or PPE rationing, having enough funds and necessities, and the overwhelming isolation because of the quarantine and lockdowns. More detailed breakdowns are as follows. Q: What is your most pressing concern? (Select up to five)Answer ChoicesResponsesI will catch the coronavirus59.45%324I will run out of sanitizing and protective supplies45.50%248Health care rationing (Because of my disability, my odds of survival may be viewed as diminished compared to an individual with a higher chance of recovery)37.25%203Health care professionals and attendants do not have enough Personal Protective Equipment (PPE) to ensure my safety33.58%183I will run out of food and basic necessities31.19%170I will be discriminated against because of my disability31.19%170I will run out of medication(s)22.02%120I am unable to access mental health support13.39%73I do not have any major concerns about the coronavirus10.28%56My ventilator may be requisitioned for use by COVID-19 patients3.49%19I am unable to manage my addiction(s)1.28%7Answered545Skipped206Overwhelmingly, respondents were concerned about contracting Covid-19 and this answer was evenly distributed across the demographic categories. The second most chosen answer, “I will run out of sanitizing and protective supplies,” sees very similar trends as the first. These concerns are similar to national trends during this early phase of the pandemic. One hundred and thirty-six respondents used the Other category to expand on their fears and concerns. These included losing a job, income reduction or elimination, Covid-19 impacting their health, and being cut off from friends, family, and support services. Respondents saw a reduction in their in-home or outpatient care and a corresponding fear of losing those services altogether. The volume of responses was a statement of people’s desire to express their needs. Some of their specific comments included:I'll experience discrimination and maybe die because of my LGBTQ status and disability.My health care aide no longer is coming, so now mom is reducing her hours at work to care for me.I am a quadriplegic no use of my arms or legs. I live alone w/o help and nobody to call to help when I am too sick to help myself with basic needs.I am not able to attend my special education program, I am not able to attend my work skill program, I am not able to attend my therapy programs, regression of my abilities, not seeing my friends.Uncertainty about returning to school; high anxiety.My neighbors complain about why I am still crying as a small autism kid and say [I’m] crazy.I'm worried about my home care aides getting sick and being unable to care for me.Total isolation.We need food and I did not get a stimulus [check].I cannot speak to ask questions, express worries, or access counseling.My grades will suffer due to online learning.Lockdown is a serious challenge to my mental health, which I’ve worked hard over the course of 20 years to improve.I have nothing to do now. I can't work and I can't go to special Olympics and I can’t see my boyfriend.Q: What is your most immediate need? (Select up to three)Answer ChoicesResponsesFinding a way to safely get food, supplies, and necessities45.39%246Having enough money/resources39.30%213Feeling safe in my current living environment21.96%119I do not have any immediate needs20.66%112Being able to make rent/house payments16.42%89Getting mental health support services14.76%80Being able to access technology/the internet13.65%74Getting accessible transportation10.33%56Accessing addiction support services1.85%10Answered542Skipped209Respondents were overwhelmingly concerned with financial and essential supply issues, though other issues are also a concern.45% of respondents were concerned about safely acquiring food and essential supplies and 40% of respondents were concerned about having enough money. A larger percentage of those concerned with having enough money were women (60%) while men were less concerned (38%). There were no other significant demographic differences in the responses.Though not a specific choice in the answers, 91 individuals chose to respond using the Other category and noted isolation and loneliness as concerns. They talked about not being able to see their family, “need[ing a] connection with others,” “having a ride because I live in the country,” and “not being able to interact with people.” Some Other comments include:Lack of program and services.Getting a coronavirus antibody test.Hand sanitizer, disposable gloves, wipes.Ability to access education.Finding a PCA!I am also caring for my developmentally disabled son with a seizure disorder. He is now living with me as his group residence closed down because of the virus.Finding a way to stay healthy mentally when every day feels like the last one, and depression/ anxiety are so easy to feel and fall into.Be able to go back to work and it being safe Because I work in shared spaces.Q: What service(s) could help you the most at this time? (Select all that apply)Answer ChoicesResponsesI do not need any additional services at this time31.61%171Advocacy26.80%145Information or referral22.00%119Mental health support services21.26%115Personal Attendant Care19.04%103Benefits advisement18.11%98Access to health care17.19%93Transportation12.38%67Peer counseling12.20%66Housing9.06%49Transition services5.91%32Addiction support services2.77%15Answered541Skipped210Though a slight plurality of respondents did not identify the need for additional services, responses across this answer were widely distributed across all potential service needs. In general, those who responded that they did not need additional services presented the most statistically unique group among the survey respondents. This group:Identified socialization/loneliness concerns as greater issues than physical or service-related issues. Were the least concerned with the impact of Covid-19 on people of color and those with underlying conditions (43% vs. 53%-64% for other respondents). Men disproportionally selected not needing more services over women. Were disproportionately White (82% of respondents who chose this answer vs. 74% of those in the survey as a whole). Identified as having two or more disabilities the least of all the respondents (17% vs. 25%-45% for the rest of the respondents who answered the question).The additional answer options did not present statistically significant variations with regards to demographic categories. Those 76 consumers choosing the Other category almost exclusively discussed either financial and employment concerns or assistance in the home. Many mentioned specific issues including “money,” “direct financial assistance,” “getting food assistance,” unemployment,” and “more help in the household.” Some Other comments include:Making sure all transportation is up and running and maintenance of supportive housing.I need the supplies in order to maintain my ventilator.Needed surgery postponed due to ban on non-emergency care.Mental health appointments via video call.Q: Which of the following have you experienced due to the coronavirus? (select all that apply)Answer ChoicesResponsesI have not experienced any of the above71.00%382I had difficulty applying for unemployment/benefits8.36%45I was furloughed7.25%39I was denied reasonable work accommodations2.23%12I was wrongfully terminated0.74%4Answered538Skipped213In general, most respondents (71%) did not identify challenges to their work life. One hundred and seventeen respondents (22%) utilized the Other answer and discussed other challenges. The survey did not ask about school, college, or other educational settings, but many respondents used this section to talk about the challenges of remote schooling, interrupted studies, and the lack of extracurricular activities. Many respondents discussed the lack of Federal Stimulus funds. These were a significant issue across the country during this time.Other respondents experienced other issues surrounding work not included in the questions, including having their hours cut, being laid off, or having their primary caregiver or guardian losing their employment. Some of the Other comments included:Quarantined and unable to return home, loss of income.Social, emotional isolation causing stress on overall health including physical health.Unemployment can’t get through; mortgage can’t get through and they threaten to file with credit bureaus.I was laid off from my part time job and waiting for my Medicaid worker to make sure applying for unemployment will not affect my benefits. It has been over a week since I have left a message.I was told I had to re-certify my Medicaid services in order to continue to receive service. During this pandemic no one answers phone and I had to ask for a fair hearing. No help via telephone is available during these challenging desperate times.Respondents did not present statistically significant variations with regards to demographic categories. Q: What do you feel are the greatest barriers you face every day? (select up to three)Answer ChoicesResponsesIsolation/Loneliness50.64%275Lack of routine46.59%253Ability or motivation to exercise39.78%216Change in sleep patterns33.70%183Decreased physical access32.60%177Gaps in attendant care18.42%100Access to communication and information13.63%74None of the above7.18%39Answered543Skipped208Generally, respondents were concerned with isolation and lack of routine, consistent with issues identified in other questions. Women and men equally identified themselves as having daily barriers Sixty-three of the Other responses identified similar issues - boredom, disruption of routines, and the inability to visit their doctors or therapists. Some of the Other comments included:Not having enough time to complete my work because I must provide educational assistance to my child, care for her well-being.Anti-disability and anti-transgender discrimination and stigma.Remote learning with school is difficult.Access to transportation.SEVERE ISOLATION.Chronic pain.Lack of adequate leadership.Respondents did not present statistically significant variations with regards to demographic categories. Q: Which of the following is true, or you believe to be true, related to the Coronavirus? (select all that apply)Answer ChoicesResponsesThe collective practices of social distancing, wearing masks, and washing hands has helped to flatten the curve73.03%398We need more testing on a wide-scale basis before they open the economy and people return to work68.26%372We need an effective, and free, vaccine for the Coronavirus that is widely available to the public as soon as possible67.52%368We need to protect/find alternatives for highly susceptible populations in nursing homes and other care facilities66.24%361We need to address the greater impact of the coronavirus on people of color and individuals with underlying conditions52.48%286Someone I know tested positive for the Coronavirus33.76%184We need to open the economy and return to work immediately8.81%48I needed to self-quarantine because I was in contact with a person who tested positive for the Coronavirus8.62%47The impact of the Coronavirus is overstated and is a means of government control7.16%39I required medical attention as a result of the Coronavirus2.94%16None of the above are true2.39%13I tested positive for the Coronavirus1.28%7Answered545Skipped206Most respondents were concerned about national or global solutions to the pandemic including the search for a vaccine, testing protection for vulnerable populations, and mask wearing and hand washing. Of the sixty-six individuals using the Other answer option, the responses were widely varied. Consumers were concerned with many issues including infecting those around them, more PPE for themselves and health care workers, national and state leadership issues around Covid-19, and protecting vulnerable populations. Some of the Other comments included:I lost a family member as a result of him contracting the corona virus.Staff in group homes need appropriate training, compensation, support, and PPE to care for and protect residents.People incarcerated need to be protected better from the disease.We need to reach people in domestic abuse situations.To give nursing homes adequate protective gear to their work force to properly protect themselves, their families and those who reside there. My Mother was in isolation for 3 weeks due to the whole facility being in lockdown and it still didn't matter; she contracted Covid-19 anyway from an aide. We almost lost her. She is doing ok, but she is not out of the woods yet.Nursing homes should not exist for most people! It is safer for people to live in their communities. Nursing homes are a death trap, and this is certainly one example! However, there are more reasons (i.e. staff shortage, neglect etc.).I want my freedom of choice back. It is time to let people decide, not government who should go back to work and who should go out. I WANT TO GO TO THE BARBER SHOP. I will NOT shave until the barber does it and this has dramatically negatively impacted on my mental health.We need to use existing systems like SNAP to funnel food dollars instead of overloading the food bank system that does not have the capacity of people or infrastructure to take care of 3M unemployed people. Instead of unemployment, employees should have received government money through their employers as pandemic pay to keep them connected and with health insurance.IV. DemographicsOf the 1,151 consumers who began the survey, approximately 225 skipped the demographic questions altogether. An analysis was performed using the responses from those that answered. Unless otherwise noted in the proceeding sections, respondents across different demographic categories did not have statistically significant needs or concerns regarding Covid-19.Location. 546 individuals answered the question on their county of residence. Survey responses were distributed well geographically across New York State. However, individuals were not distributed according to the general population of New York State. All the New York City Counties together (Bronx, Kings, New York, Queens, and Richmond), saw 118 responses for a general population of 8.3 million compared to 416 responses for non-NYC New York State population of 10.7 million. Non-NYC residents were over-represented in this survey. CountyNumber of RespondentsCountyNumber of RespondentsCountyNumber of RespondentsAlbany26Lewis5Schenectady5Bronx21Livingston2Schoharie0Brooklyn2Madison5Schuyler2Broome6Manhattan/NYC44Seneca2Cayuga1Monroe13St. Lawrence15Chautauqua1Montgomery2Steuben5Chemung2Nashua1Suffolk38Chenango1Nassau33Sullivan2Clinton4Niagara16Tioga3Columbia1Onondaga19Tompkins25Cortland5Oneida11Ulster8Dutchess10Ontario2Valley stream1Erie44Orange5Warren9Flushing1Orleans2Washington4Franklin1Oswego4Wayne1Fulton1Otsego3Westbury1Genesee9Queens20Westchester16Greene2Rensselaer4Wyoming3Herkimer5Richmond10Yates1Jefferson8Rockland8Yonkers2Kings21Saratoga10Gender. The survey respondents were not evenly distributed between men and women. More women than men by a significant margin completed the survey.Answer ChoicesResponsesMale42.97%226Female53.80%283Choose not to answer2.09%11Other (please self-identify)1.14%6Answered526Skipped225Those who selected “Other” were evenly split between identifying as “Transgender” or “Queer.”Age. The bulk of individuals answering this survey (62%) were between 25-59 years of age. The narrow banding of some of the answer selections, and the wide band for the 25-59 age group makes a further breakdown and analysis by age more challenging. What age group are you in? (Select one)Answer ChoicesResponsesUnder 50.38%25-19 years7.60%4020-24 years9.32%4925-59 years62.17%32760-older19.39%102Unavailable0.00%0Choose not to answer1.14%6Answered526Skipped225Race/Ethnicity. The ethnicity breakdown of the respondents (73.5%) is slightly more white-leaning than the overall breakdown of New York State as a whole (69.6%). Though a more direct comparison is difficult as the U.S. Census allows individuals to select multiple answers. This discrepancy is likely due to the over-representation of non-NYC residents. What race/ethnicity do you identify with? (Select one)Answer ChoicesResponsesNative American1.33%7Asian4.18%22Black or African American6.27%33Native Hawaiian or Other Pacific Islander0.19%1White73.57%387Hispanic/Latino of any race or Hispanic/Latino only5.70%30Multiracial (Two or more races)4.18%22Unknown0.76%4Choose not to answer3.80%20Answered526Skipped225Community Identification. Respondents distributed evenly across many different unserved/underserved community groups. What unserved/underserved community groups do you identify with? (Select all that apply)Answer ChoicesResponsesMinorities with disabilities21.56%113LGBTQIA with disabilities12.02%63Veterans with disabilities3.63%19Youth/young adults with disabilities35.50%186Seniors with disabilities21.95%115Immigrants with disabilities3.63%19Deaf/blind individuals8.78%46Rural residents with disabilities18.89%99None of the above15.84%83Other (please identify below)0.00%0Other (please identify below)10.88%57Answered524Skipped227Of those who used the Other answer, many noted they were an “adult with disabilities,” “autistic,” “severe disabilities,” “HIV,” or other more general category. Categories of Disability. Respondents were asked to identify their more specific disability. Specific questions included sub-categories for Cognitive, Physical, Mental, Sensory, and Other. Breakdowns of these categories are below. Note that the percentages of responses are of those who answered that section. Cognitive:Answer ChoicesResponsesAutism42.49%150Epilepsy19.55%69Intellectual Disability36.26%128Learning disability39.09%138Other cognitive disabilities33.99%120Traumatic and other brain injuries20.96%74Answered353Skipped398Physical:Answer ChoicesResponsesAmputation2.05%8Back injury17.95%70Cerebral palsy18.46%72Environmental and other related illnesses11.54%45HIV/AIDS1.03%4Muscular dystrophy2.82%11Neuromuscular17.95%70Orthopedic25.64%100Spina bifida2.05%8Spinal cord injury6.67%26Other congenital birth anomaly5.90%23Other physical disabilities50.77%198Answered390Skipped361Mental:Answer ChoicesResponsesEmotional/behavioral disabilities55.16%171Mental health diagnosis58.06%180Other mental illnesses16.77%52Substance abuse4.52%14Answered310Skipped441Sensory:Answer ChoicesResponsesBlindness6.40%16Deaf/blind1.20%3Deafness4.00%10Hard of hearing21.60%54Low vision (partially sighted)26.00%65Multiple Disabilities (Two or more)29.60%74Other sensory disabilities42.80%107Answered250Skipped501Many individuals identified other categories of disability in the open text field. Most were more specific definitions of categories already listed, but some were new and very specific to their particular diagnosis including autism, leukemia, cancer, schizophrenia, and Parkinson’s, among others.Other Disability (Please Comment)Answered173Skipped578V. MethodologyEarly in the Covid-19 Pandemic, The New York State Independent Living Council (NYSILC) conducted a survey of its peers to assess their concerns and needs. The survey was distributed by NYSILC, the IL network, and stakeholder organizations to their clients across New York State and widely shared via social media. The survey was available to respondents between April 28th and May 15th via Survey Monkey.The Survey consisted of six questions related to the concerns, experiences, and barriers created by Covid-19 with a variety of follow up demographic questions.1,151 individuals began the survey. The first question, “are you a person with a disability who lives in New York State” removed all “No” responses from moving onto the rest of the survey. 399 individuals were not able to move on.The removal of these individuals from the rest of the survey posed two challenges. The removal of a control group of non-disabled individuals. The removal of individuals who are completing the survey on behalf of a disabled individual (parents, guardians, caretakers, etc.).Each of the six COVID-19-related questions included an “Other: Please Explain” answer option. Many individuals used the Other option to convey the specifics of their situation or expand on their answers from other selections. The Other answer was used substantially by the respondents, with some questions receiving almost 140 “Other” answers.VI. AcknowledgementsThe draft report was developed and prepared by Nicole O’Connor and Kevin DePodwin, Krieger Solutions LLC. Final review, editing and preparation of the report provided by: Brad Williams and Amy Wink Krebs, NYSILC, and Maya Sabatello, LLB, PhD, Associate Professor of Medical Sciences (in Medicine), Center for Precision Medicine and Genomics, Department of Medicine?Associate Professor (in Medical Humanities and Ethics),?Division of Ethics, Department of Ethics and the Humanities Co-Director, Precision Medicine: Ethics, Politics and Culture Project?at Columbia University. ................
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