New York’s IDD service system is at a critical juncture. With 95,000 individuals living in the community, 30,000 of whom are supported by aging caregivers, and thousands more waiting for services, the system faces mounting pressure.

Workforce shortages, lack of housing options, outdated regulations, and fragmented healthcare access have created an environment where families and providers often operate in crisis mode.

These legislative priorities aim to modernize policies, strengthen supports, and ensure sustainable, person-centered care for individuals with IDD.

Priority 5.

Expanding Housing Options for People in NY State
with Intellectual and Developmental Disabilities

Current Challenges

New York must modernize its approach to community‑based housing for people with intellectual and developmental disabilities (IDD). The proposal aims to increase flexibility, align policy with person‑centered values, and open pathways to new, integrated housing models.

  • 95,000+ New Yorkers with IDD live independently or with aging caregivers
    • Many do so with insufficient support, placing both individuals and caregivers at risk.
  • Regulations limit housing subsidies to four individuals per home
    • This restricts choice and prevents creative, person‑centered housing development
  • Families face crisis placements due to lack of options
    • Without alternatives, families often encounter emergencies that could have been avoided.
  • Aging infrastructure and inadequate capital funding
    • Existing homes cannot meet growing demand without significant investment.
  • Regulatory constraints prioritize compliance over outcomes
    • Innovation is hindered by outdated frameworks that don’t reflect modern needs.
  • Nurse Practice Act limitations
    • Restrictions on DSPs administering medication in non‑certified settings further limit housing flexibility.

  • Remove the four‑person housing subsidy cap
    • This outdated rule limits the number of residents who can live together and restricts innovation in housing design and support models. Eliminating the cap allows for individualized living arrangements aligned with each person’s preferences.
  • Use Medicaid HCBS waivers and ARPA reinvestments for community housing development
    • Strategic use of these funding streams will support capital investments in small community homes and innovative living arrangements.
  • Adopt proven, cost‑effective housing models
    • States like Colorado and Minnesota have implemented flexible housing solutions that promote independence, expand options, and reduce long‑term costs.

  • Leverage Self‑Direction funding to pool and share resources
    • Individuals can combine funds to access shared supports, allowing for more diverse and sustainable housing arrangements.
  • CCOs guide families and help them plan proactively
    • Care Coordination Organizations play a crucial role helping families avoid crisis placements and plan for long‑term living needs.
  • Partner with local developers and agencies
    • Community‑based collaborations enable the creation of shared homes, co‑housing communities, and adaptable living environments.
  • Modernize regulations to support innovation
    • Updated rules should embrace telehealth, adaptive technology, and creative housing solutions that enhance safety and independence.

  • More housing options based on individual choice

    • A broader array of community‑based settings aligned with each person’s needs and preferences.
  • Cost‑effective alternatives to crisis placement
    • Supporting individuals proactively reduces overreliance on emergency placements.
  • Greater community inclusion and independence
    • Flexible housing fosters integration, autonomy, and consistency in daily living.
  • Improved health outcomes
    • Stable housing reduces emergency room visits caused by housing instability or unmet support needs.

Expanding housing options is not only a matter of policy reform — it is a commitment to dignity, independence, and true inclusion for thousands of New Yorkers and their families.

Your voice matters. Contact your legislators and urge them to #InvestInUs, because every New Yorker with IDD deserves dignity, stability, and opportunity.

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