Comments on the Proposed 1115 OPWDD Waiver from Resources for Children with Special Needs

We are pleased to submit comments on behalf of Resources for Children with Special Needs (RCSN), an independent not-for-profit organization that promotes bright futures for New York City (NYC) children and youth with special needs and their families. We are a United States Department of Education Parent Training and Information Center and the lead organization for New York State Special Education Parent Centers for the Bronx and Manhattan. We thank you for the opportunity to provide feedback regarding OPWDD’s Five Year Plan.

As a parent organization, we recognize that families are the primary providers of support for the vast majority of individuals with disabilities. Our comments are offered in this context, and are focused on assuring that  parents and other family members are valued and informed partners in the service planning and delivery process. Informed parent involvement is essential to the success of systems reform efforts.

For almost 30 years, RCSN has been working with NYC families to help them understand and negotiate complex public systems, including education, mental health, developmental disabilities, and children’s services. Our work promotes the inclusion of children and young adults in community life, and in after-school programs, summer camps, and other community resources and natural support systems.  Because research indicates that family and community engagement are essential predictors of successful outcomes for children and youth with disabilities, our work emphasizes informed decision making through parent information and training. We help families access and the information and develop the skills they need to partner with educators and service providers, and thus to advocate and partner effectively on behalf of their children.  The successful implementation of the Five Year Plan and person-centered and directed services depends on the informed partnership of families.

The American Disabilities Act (ADA) and the Supreme Court decision in the Olmstead v. L.C. case give people with developmental disabilities the legal right to live in their home communities with proper supports. The People First Waiver holds significant promise for children and youth with disabilities to have greater control, better options, and more opportunities for a meaningful life in the community. We recognize that proper supports can be expensive, especially for people with the most significant disabilities. We urge OPWDD to maintain its commitment to the most vulnerable people in our community by assuring that the promise of choice and control is not at the expense of the families who most need support.  

We are concerned that the proposed changes to an already complex system may make access to services even harder for families, especially those New York City families with language and economic barriers to service.  We need to assure that care management entities (such as the proposed Developmental Disabilities Individual Support and Care Coordination Organizations, DISCOs),  do not create additional layers of bureaucracy and barriers for families who are already under stress.  

We recommend that the service system design incorporate an independent parent information and training component which is outside the care management system and direct service provider community. Such an entity will help assure that that families do not rely on organizations with fiscal incentives that are not primarily aligned with families or individuals with disabilities as their primary information source. Families must have access to an unbiased resource without incentives to promote any particular service or provider entity. 

Our experience indicates that young people who return to their home communities after educational residential placement may be especially disconnected from formal and natural support systems. Systems reform should include incentives for ongoing coordination and planning for transition from school to adult life. For systems reform to succeed, person-centered planning should be incorporated for the most severely involved individuals not later than age 14.

Integrated after-school, social, recreational and social programs, family support, respite and a host of other non-Medicaid services are essential to families, and are at tremendous risk. The development of the OPWDD system must assure that the solution to state and city budgetary issues does not include abandonment of families or an expectation that families will provide increasing levels of support to family members with disabilities on their own.  OPWDD systems reform must take into account the larger context of the funding environment and create opportunities for inclusion, independence, and a full life in the community--otherwise People First is more rhetoric than reality. For this reason, the full partnership of families is essential and must be a carefully designed element of the new system.

Thank you so much for this opportunity.  We look forward to working in partnership with OPWDD and families in this process, and we are here to help. Please do not hesitate to reach out to us. 

Rachel Howard

Executive Director, RCSN

For a PDF of the Five Year Plan click here.