This guest post was written by Chris Palega, family caregiver, NYADD regional lead – Finger Lakes

The Family Support Services (FSS) program is rooted in a small pilot project, started in 1984 by the Office for People with Developmental Disabilities (OPWDD), that assisted 200 families who were supporting loved ones with developmental disabilities at home.

As the program grew across the state, OPWDD, working in partnership with families and non-profit provider agencies, developed and delivered person-centered, family-driven supports and services designed to help meet their unique and, at times, overwhelming challenges.

Today, FSS provides a broad spectrum of supports and services including advocacy, help for families with high and complex needs, respite and transportation. FSS’s most popular program, Family Reimbursement, covers the cost of goods and services families need to help keep them intact and fully functional. These programs are tasked with meeting a number of goals including maintaining family unity and maximizing the potential of a family member with a developmental disability.

In July 2022, OPWDD implemented changes to Family Reimbursement policies via Administrative Directive Memorandum (ADM #2022-02R). Unfortunately, these changes have undermined the program’s ability to support families, causing them to suffer needlessly. Some Family Reimbursement programs across the state have even closed under the additional administrative burdens of this ADM. Families are losing hope.

It’s important to know that FSS was established legislatively via Mental Hygiene Law § 41.43 and supported by Chapter 552 of the Laws of 1992. In just a few brief paragraphs, these statutes speak with clarity and conviction about the importance New York State placed on families who care for their loved ones with developmental disabilities at home.

But despite legislative intent that “family support services should be family-driven,” families were not engaged to drive these policy changes. And despite legislative intent that family supports be “goods, services, and subsidies, determined by the family,” OPWDD compiled and issued a non-allowable list of goods and services without allowing families to determine anything.

Over the past two years, families, providers and others have poignantly and repeatedly raised their voices to deride these policy changes. In March 2023, a research report by the Statewide FSS Committee provided data and stakeholder engagement on the negative impact these policy changes were having on OPWDD’s ability to meet the goals set forth for FSS.

More recently, Sen. John W. Mannion, chair of the Senate Committee on Disabilities, and Assembly Member Rebecca A. Seawright, chair of the Assembly People with Disabilities Committee, both sent letters to OPWDD Commissioner Kerri Neifeld stating their unequivocal opposition to these policy changes.

Despite all of this and repeated assurances from OPWDD that these policies are open to change, they remain an inflexible foil to the agile, person-centered, family driven program that FSS Family Reimbursement once was.

In an effort to relieve the additional burdens this ADM has placed on families, the New York Alliance for Developmental Disabilities (NYADD) is advocating for:

  1. The immediate elimination of the non-allowable list of goods and services that stifle FSS’s ability to serve families in a way that is family-driven, flexible, effective and accountable.
  2. The immediate elimination of a rule change that excluded some of our community’s most challenged families from receiving family reimbursement.
  3. An independent, multi-stakeholder review of this ADM.
  4. A reimagining of FSS Family Reimbursement in a way that recognizes the value families who support their loved ones at home bring to a system of care in crisis.

We are firm in our belief that family caregivers reduce the demand on an overwhelmed system of more costly and more restrictive residential placements. Likewise, these families greatly reduce the demand on a paid Direct Support Professionals (DSP) workforce that’s already in crisis.

NYADD, along with many in our community, believe that properly targeted investment in family caregivers is not only the right thing to do, but is among the most responsible and effective investments that can be made as we work to ensure the success of both OPWDD and the people it’s committed to serving.

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