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Workforce shortages, lack of housing options, outdated regulations, and fragmented healthcare access have created an environment where families and providers often operate in crisis mode.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 1.
Modernizing Medication Administration for People with IDD in New York
Expected Outcomes
- Greater independence and quality of life for individuals and families.
- Individuals will be able to live in community settings of their choosing without being limited by outdated medication administration restrictions.
- Increased housing development and options for people with IDD.
- Providers will be able to expand residential options including innovative housing models.
- Reduced reliance on institutional placements.
- Families will no longer feel forced to choose between safety and independence, decreasing preventable moves to high‑cost, highly restrictive settings.
- Improved health outcomes and medication adherence.
- Timely, consistent medication support increases stability, reduces health complications, and strengthens overall well‑being.
- Fewer emergency visits and crisis interventions.
- Empowering trained staff to administer routine medications prevents issues from escalating into crises requiring hospitalization.
Supporting A7284 means modernizing outdated regulations and policies to empower people with IDD to live with dignity and independence and thrive in their communities without sacrificing health.
Your voice matters. Contact your legislators and urge them to support A7284. Together, we can build a future of independence and community living for people with IDD.
Current Challenges
Outdated laws and regulations prevent New York’s service system from meeting the needs of people with intellectual and developmental disabilities, particularly those who wish to live more independently.
- New York’s Nurse Practice Act restricts who can administer medication in non-certified settings.
- This prevents safe, common‑sense support in apartments, shared living, and other non‑institutional settings.
- Direct Support Professionals (DSPs), even when trained, are often prohibited from giving routine medications.
- Even when DSPs know the person best and provide daily support, they are blocked from assisting with standard medications.
- People living independently or in community-based housing face unnecessary barriers to safe medication support.
- Without nursing staff on‑site, individuals may be forced into more restrictive residences purely to access basic medication help.
- Families must choose between independence and medical safety, leading to: Crisis placements and unnecessary institutionalization
- This leads to preventable crises, caregiver burnout, and avoidable institutionalization.
- Outdated regulations limit housing innovation and person-centered care.
- The current system creates bottlenecks, increases costs, and reduces opportunities for people to thrive in community settings.
Our Proposal: Support Assembly Bill A7284 and Bill (name to be added)
Assembly Bill A7284:
- Modernizes medication administration policy by allowing trained DSPs to assist with routine medications in non-certified settings.
- This removes one of the biggest barriers to independent living.
- Provides nursing oversight without requiring on-site presence, using telehealth and consultation models.
- Clinical safety is preserved without imposing unnecessary staffing burdens.
Assembly Bill XYZ:
- Expands access to medication assistance for non-certified services, including self-direction.
- People directing their own services gain the flexibility they need to live independently.
- Removes barriers created by current law, which forces individuals into institutional care or unsafe workarounds.
- Families and providers will no longer need to rely on emergency services or restrictive placements to manage routine medications.
- Aligns New York policy with person-centered, community-based care models, giving people with IDD the freedom to live safely and independently.
- This supports the state’s long‑term vision of safe, flexible, individualized supports that honor people’s choices.
How It Works
This proposal modernizes medication administration by creating a safe, supervised, and flexible model that supports independence while maintaining strong clinical safeguards.
Assembly Bill A7284:
- DSPs complete standardized medication administration training.
- Training ensures DSPs have the skills to safely assist with routine medications, aligning with national best practices.
- Nurses provide clinical oversight via consultation and telehealth.
- Remote oversight helps ensure safety while eliminating unnecessary, costly requirements for on‑site nursing.
- Clear protocols distinguish routine vs. complex medical needs.
- Technology ensures monitoring and accountability.
- Electronic documentation, alerts, and remote communication tools support accuracy and accountability.
Assembly Bill XYZ:
- DSPs may administer medications when trained directly by the individual or their chosen representative.
- This respects autonomy, aligns with self-direction principles, and mirrors consumer-directed models already used in other systems.
- Consistent with consumer-directed and person-centered practices.
- People gain more control over how their support is delivered and who delivers it.
Priority 2.
Supporting Families as Caregivers
Current Challenges
- 61% of people with intellectual and developmental disabilities receiving HCBS Waiver Services live with family caregivers, who often provide full-time care without compensation
- This lack of support leads to caregiver burnout, service disruptions, and in many cases, unnecessary institutional placement.
- The burden on families strains both emotional well-being and financial stability, weakening family units and driving up public care costs.
Our Proposal: Support the Family as Caregiver Support Bill S.4462-B/A.464-B
We urge lawmakers, families, and advocates to support Senate Bill S.4462-B (Mayer) and its Assembly companion A.464-B (Steck), which authorize parents and guardians to serve as paid, certified complex care assistants for individuals with IDD. This proposal:
- Recognizes family caregivers as official providers under New York’s long-term care system, aligning policy with the Complex Care Assistant framework.
- Authorizes Medicaid coverage for certified family members to provide complex home care, such as medication administration and skilled nursing tasks.
- Aligns state policy with existing consumer-directed home care programs while extending care options for individuals with IDD.
How It Works
- Defines “family member” (parent, guardian, sibling, etc.) and “complex care assistant” certification requirements to perform ADLs, IADLs, medication administration, tracheostomy care, ventilator care, and more.
- Medicaid director will establish certification/training and set reimbursement rates for services rendered.
- Certified family caregivers will be employed by a licensed agency and undergo in-person examination and training.
- The structure ensures spending stays within existing Medicaid reimbursement limits for no additional state costs, and requires a federal plan amendment to implement.
Reference source: NYSenate.gov, billtrack50.com, caseforinclusion.org/publications/data-snapshots, and legiscan.com
Priority 3.
United with NYDA: Championing Equitable Pay for Those Who Support our IDD Community
Current Challenges
-
From 2020–2025, NYS provided only 15.8% combined inflationary increase to IDD non-profit care agencies, while inflation surged.
- Workforce crisis:
- 4 out of 5 Direct Support Professionals (DSPs) earn under $20/hour, below a living wage.
- Half of all DSPs experience food and housing insecurity.
- High staffing vacancies leave many people with I/DD unserved or underserved.
- Agencies struggle to maintain housing, vocational training, therapeutic services, and community programs due to underfunding and rising costs.
Our Proposal: Support the Family as Caregiver Support BillS.4462-B/A.464-B
We urge lawmakers to support targeted investments that stabilize care systems and workforce:
- Targeted Inflationary Increase (2.7%).
- Covers benefits, food, transportation, and other essentials.
- CareForce Affordability Initiatives.
- Affordable housing preference for DSPs.
- Employer-assisted housing matching grants.
- SONYMA “CareForce” down payment assistance and interest rate reduction.
- Infrastructure & Care System Investment.
- Expand Prior Property Approval (PPA) to align with climate goals.
- New capital funding demonstration program for innovative service models.
- Increase Residential Reserve for Replacement (RRR) rate to $2,500 per resident Upstate and $3,000 NYC/Long Island.
How It Works
-
Housing Support: Grants and down payment assistance help DSPs secure stable housing.
- Childcare Expansion: Capital funding for childcare centers and expanded NYS Child Tax Credit.
- Healthcare Support: $2,500 per employee allocation to offset rising health care costs.
- Capital Investments: Maintain and upgrade housing and service infrastructure to ensure continuity of care.
Expected Outcomes
-
Fair, competitive wages for DSPs to reduce vacancies and stabilize the workforce.
- Improved housing and childcare access for frontline staff.
- Enhanced infrastructure for agencies providing housing, vocational training, and therapeutic services.
- Better quality of care for New Yorkers with I/DD—meeting human rights standards.
- Reduced turnover and burnout, ensuring continuity and reliability in care delivery.
These investments are critical to sustaining care for people with IDD and supporting the workforce that makes independence possible.
Your voice matters. Contact your legislators and urge them to #InvestInUs, because every New Yorker with IDD deserves dignity, stability, and opportunity.
Priority 4.
CARE COORDINATION PLUS (CCO+):
Strengthening Care for People in New York With Intellectual and Developmental Disabilities and Mental Health Needs
Current Challenges
New York’s Care Coordination Organizations (CCOs) support 130,000 individuals with intellectual and developmental disabilities (IDD) — many of whom also live with co‑occurring mental health conditions. Yet, because behavioral health, developmental disability services, and primary medical care often operate in silos, people experience:
- Delayed access to psychiatric care
- Wait times for mental health evaluation or treatment can extend for months or even years, leaving individuals without timely interventions.
- Over‑reliance on emergency departments
- Because preventive, coordinated care is difficult to access, individuals are forced to seek help in crisis situations.
- Unnecessary hospitalizations
- Without early, community‑based mental health support, individuals are more frequently admitted for preventable psychiatric or medical crises.
This fragmented system leads to avoidable suffering for individuals and families — and drives up healthcare costs for the state.
Our Proposal: The CCO+ Pilot Program
We urge legislators to establish a CCO+ Pilot Program by amending the Mental Hygiene Law, allowing qualified CCOs to provide enhanced, integrated care for individuals with both IDD and mental health needs. The pilot includes:
- Intensive, multidisciplinary team-based care management
- Care would be delivered by teams that include behavioral health clinicians, nurses, and professionals specialized in IDD.
- 24/7 behavioral health access
- Immediate support during crises, reducing ER use and supporting families in real time.
- Enhanced Medicaid reimbursement
- An improved funding structure enables CCOs to provide proactive, rather than reactive, mental health care.
- This approach builds on existing CCO services while filling critical gaps in psychiatric and behavioral health support.
How It Works
The CCO+ model introduces comprehensive, specialized mental health support designed specifically for individuals with IDD:
- Specialized psychiatric care management
- Clinicians trained in both mental health and intellectual/developmental disabilities provide tailored assessments and care planning.
- Virtual urgent behavioral health care
- 24/7 access to crisis support and immediate interventions — especially valuable for rural families or those with transportation barriers.
- Tele-psychiatry and tele-psychology appointments
- Flexible, on-demand access to a virtual network of licensed professionals ensures continuity of care.
- Enhanced per-member per-month reimbursement rates
- This funding mechanism enables a shift from crisis-based intervention to sustained, preventive care.
Expected Outcomes
- Fewer emergency room visits
- Better coordination means crises are managed before they escalate to emergency‑level care.
- Reduced preventable crises and institutionalization
- Proactive behavioral health support keeps people safely in their homes and communities.
- Improved long‑term health outcomes
- Consistent access to psychiatric and behavioral health services supports stability, independence, and quality of life.
- Cost savings for Medicaid and Medicare
- Preventing crises and hospitalizations significantly reduces overall spending.
- Smarter, data‑driven Medicaid spending
- Enhanced care coordination leads to better resource allocation and more predictable costs.
- Stronger alignment with New York State’s mission
- This model supports New York’s commitment to helping vulnerable populations thrive in community settings.
The CCO+ model offers a smarter, more compassionate approach to supporting individuals with both IDD and mental health needs by closing long‑standing gaps in care and providing timely, specialized support. With this investment, New York can reduce preventable crises, strengthen community‑based services, and build a system that truly meets people where they are — with dignity, equity, and respect.
Your voice matters. Contact your legislators and urge them to #InvestInUs, because every New Yorker with IDD deserves dignity, stability, and opportunity.
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.
Our Proposal: Expand Housing Options
- 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.
How It Works
- 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.
Expected Outcomes
-
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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