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Joint Disability Letter in Support of NJ Transition Plan

Dear Deputy Commissioner Arye, Deputy Commissioner Apgar and Assistant Commissioner Shea:

We write on behalf of a broad array of national and New Jersey organizations representing people with disabilities and civil liberties to express support for the State of New Jersey’s proposed statewide home and community-based settings transition plan. Although New Jersey’s existing developmental disability service provision system is in need of significant improvement, the state has compiled an exemplary plan to support the transition of New Jersey’s Medicaid-financed Home and Community Based Services (HCBS) system to truly integrated settings for service delivery.

New Jersey has developed a strong plan to bring its system into compliance with the new HCBS settings rules, while at the same time furthering compliance with its civil rights obligations under the Americans with Disabilities Act and Olmstead v. L.C. and maximizing opportunities for federal housing resources.  While many of our organizations will be submitting separate comments with more detailed information, we would like to highlight our support for the following components of New Jersey’s transition plan:

  • Limits on the size of congregate residential settings.  New Jersey plans to limit the size of congregate housing settings to no more than four people with disabilities living together (or up to six people when necessary for programmatic reasons and with prior approval).  Although the ideal setting would be one in which each individual with a disability lived alone or with chosen roommates or family members, smaller settings generally provide more opportunities for individuals to have control over their daily schedules and activities and to access the broader community, as required by the rule.  Numerous other states have included similar size limits on congregate settings for individuals with intellectual and developmental disabilities as part of their efforts to further compliance with the Americans with Disabilities Act and Olmstead v. L.C.[1]  We believe that this requirement should begin with new settings and be phased in across all residential settings supported by HCBS funding by the end of the five-year transition period designed by CMS.
  • New rent subsidy funding for individuals living in the community.  New Jersey’s transition plan noted that the vast majority of its current residential settings are “disability-specific settings” – meaning settings where all of the residents are people with disabilities – and that it needs to create new capacity in order to comply with the rule’s requirement that all HCBS participants be offered a choice of a non-disability specific setting.  According to the State of the States in Developmental Disabilities data set, New Jersey’s community services system relies on group homes and other provider-owned residential settings at a much greater rate than the rest of the country.[2] Providing additional rental subsidies to help people live in their own homes or apartments will also further New Jersey’s compliance with Olmstead.  As part of its Olmstead settlement agreement regarding people with mental illness,[3] New Jersey is already providing rental subsidies (as well as access to community-based services) to help people live integrated in their communities.  Other states have provided similar rental subsidies as part of Olmstead settlement agreements.[4]
  • Limiting the concentration of people with disabilities in housing complexes where rental subsidies will be used.  New Jersey proposes to only allow the use of rental subsidies in housing complexes (that is, settings with units for more than four individuals) where no more than 25 percent of the units are set aside for people with disabilities.  This aligns with requirements by the U.S. Department of Housing and Urban Development for the use of federal housing funds through the Section 811 program, which New Jersey currently utilizes for rental subsidies for other disability populations.[5]  In addition, numerous states have included similar limits on the use of rental subsidies as part of their Olmstead compliance efforts.[6]
  • Bringing New Jerseys Day and Employment Services into further compliance with both the settings regulation and Olmstead. The state’s transition plan indicates that the state will focus on competitive integrated employment for all individuals. We urge the state to supplement this important values statement with measurable and specific commitments to end new admissions to sheltered workshops, reduce the state’s existing sheltered workshop census on a set timetable and expand integrated individual supported employment services to people with intellectual, developmental and psychiatric disabilities.
    Additionally, the state’s transition plan requires that facility-based day habilitation programs modify their practices to ensure that “the facility should serve as a hub and central meeting location, while the majority of programming is offered out in the community in activities such as volunteering, prevocational training, recreation” and that “no overall facility schedule for participants; each individual should have a unique schedule reflecting their interests and goals”. We support these requirements and ask that the State clarify that an individual can receive more than one type of day service (for example, both supported employment and day habilitation) and clarify how the 75% requirement applies in such circumstances.  We recommend that the state look at the amount of time an individual spends outside of a facility-based day setting across all services.  In addition, we recommend that the state clarify that for purposes of the 75% requirement, time spent in a mainstream work environment, such an office where a Medicaid participant is engaged in competitive employment, counts towards the 75% requirement.
  • Prohibiting HCBS funding from flowing to gated communities, farmsteads and other campus based residential programs. The state’s transition plan indicates that the state will prohibit HCBS funds from flowing to gated or secured communities or settings co-located with residential schools. We support this prohibition and urge the State to expand it to encompass disability-specific farmsteads, clustered group home environments and other large congregate settings, particularly those owned or controlled by a provider. These settings tend to isolate people with disabilities and prevent meaningful access to the broader community, both because they tend to be geographically and architecturally isolated and because people living in these settings are housed primarily with other people with disabilities. Many settings offer co-located and operationally related non-residential services and programs, such as recreational programs, in order to minimize the need to leave the setting.  As CMS noted in the rule and its subsequent guidance, such isolated settings are presumed to be institutional and not community-based.
    Although some of these settings invite people without disabilities to live in the same housing arrangements as service recipients with disabilities, these individuals are often staff members or volunteers.  As a result, residents with disabilities often only interact with people in the surrounding community on specific dates or while working in provider-owned enterprises, such as a farm stand, or “community service” days in which members of the public are invited into the setting.  This limits opportunities for full integration and sends a message that the residents with disabilities are projects, not peers. We urge the state to adopt a comprehensive prohibition on such campus-based models. New Jersey should not request flexibility to construct or fund campus-based housing models, which serve to segregate people with disabilities from their communities, reduce choice and channel funds designated for community based service provision to institutional models.

We urge the State to maintain the substance of its existing settings transition plan, particularly those provisions we articulated above. As is always the case with progressive systems change, some will — and have — opposed your proposal. This is not uncommon – in every instance where a State proposes to close an institution or other segregated setting, opposition exists from providers and even families who fear change. Yet countless state experiences show that following implementation, consumer satisfaction and cost-effectiveness are both drastically increased by greater community integration. We urge the State to maintain the commitment to the rights of people with disabilities articulated in its settings proposal.

 
Regards,
 
The Autistic Self Advocacy Network
American Civil Liberties Union (ACLU)
American Civil Liberties Union of New Jersey
Autism Society of America
Association of People Supporting Employment First (APSE)
Bazelon Center for Mental Health Law
Council of Parents Attorneys and Advocates
Statewide Parent Advocacy Network of New Jersey
TASH
National Black Disability Coalition
National Down Syndrome Congress
New Jersey Advocacy Resources for Parents
New Jersey Coalition for Inclusive Education
Neighbors Inc.
Not Dead Yet
Quality Trust for Individuals with Disabilities

 

[1] See for example settlement agreement in United States v. Georgia (limit of four individuals with IDD in group homes), agreement available at http://www.ada.gov/olmstead/documents/georgia_settle.pdf; settlement agreement in United States v. Virginia (same limit), agreement available at:  http://www.ada.gov/olmstead/documents/virginia_final_settle.pdf.

[2]  See New Jersey’s state profile in the State of the States online data set, available at http://www.stateofthestates.org/documents/NewJersey.pdf; US data profile available at http://www.stateofthestates.org/documents/UnitedStates.pdf

[3] See settlement agreement in Disability Rights New Jersey v. Velez, agreement available at http://www.bazelon.org/LinkClick.aspx?fileticket=lwXX02W3Q_4%3d&tabid=182.

[4] See for example settlement agreements between the United States and Delaware, Georgia, Virginia, North Carolina, and New York, available at www.ada.gov/olmstead.   

[5] For more information about the requirements for the Section 811 program, see http://811resourcecenter.tacinc.org/media/14398/faqs_part_one.pdf.

[6] See for example settlement agreements between the United States and Delaware (20% concentration limit), North Carolina (25% concentration limit), and New Hampshire (10% concentration limit), available at www.ada.gov/olmstead and the settlement agreement in Williams v. Quinn (25% concentration).

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