The NYS Medicaid Waiver—Critical Info About 2026 Requirements

By Kami-Leigh Agard

My daughter, Soanirina “Soa” has had the NYS Medicaid Waiver, managed by the Office for People With Developmental Disabilities (OPWDD), since she was four years old. This waiver, also known as the Home and Community-Based Services (HCBS) Waiver, provides services not typically covered by standard Medicaid, enabling individuals to receive support and care in their homes and communities, rather than in institutional settings. For example, through the waiver program, my daughter receives respite and community rehabilitation services at no cost. However, two months ago, when we received the letter for her annual renewal, we were a bit confused. The 2026 Medicaid Waiver renewal form now stated the following: “This is a waiver service case. Due to new rules, we now need the parent’s income to process the case. We also need to know how many people are in the household.” This new renewal process goes against the whole point of calling it a waiver and that raises all sorts of questions about the state’s commitment to the program. Also, what will happen to Soa’s eligibility when she turns 18 in October?

Concerned, we reach out to our care manager, who manages Soa’s services through OPWDD. The response: “For Children under the age of 18, Medicaid is required to run Medicaid budgets with parental income. If it is determined that minor child is not Medicaid eligible with the parental income, then they can proceed to the next budget which is when they will verify if child has the OPWDD waiver approval in place AND has been deemed disabled either by Medicaid or Social Security standards. If both of these requirements are in place, then the parental income can be removed from the Medicaid budgets. Please note that OPWDD disability status is not the same as being deemed disabled by Medicaid and/or Social Security. Parents—if the applying individual is between 18 to 21 years, must include their income on the renewal application if they reside in the same household. Medicaid is required to determine if individual is eligible for Medicaid with the parental income. If the individual is not Medicaid eligible because of the parental income, then Medicaid will verify if individual has been deemed disabled either Medicaid standards or SSA standards. Please provide verification of either prior Medicaid disability approval or Social Security Administration disability approval. Please note that periodically, disability review updates will also be required but Medicaid will notify the parents if updated medical documentation is needed. These are not new rules but were relaxed during Covid.”

Interesting. This year was the first time that we had to submit combined pay stubs from the last month, (for renters) a letter from the landlord stating not just how many people live in the household, but their specific names, and for homeowners, the same above information.

Plus, even more critically, under the new OPWDD regulation, all individuals under 18 years old are required to complete the CANS (Child and Adolescent Needs and Strengths assessment) every year, and those over 18 are required to complete the CAS (Coordinated Assessment System assessment) every two years. Effective June 1, 2026, without a valid CANS/CAS assessment, OPWDD will not review any budget.

CANS and CAS ensure that services are tailored to the individual’s specific needs, helping to determine the type and level of services for the Medicaid waiver. Requests are made by a care manager, often at initial enrollment, when seeking residential services, or during a significant change in condition. The assessments are conducted by Maximus, a third party agency, and involves reviewing documents, individual observation, and interviews.

However, what still stands is that even with these new guidelines, the Medicaid Waiver ensures that individuals with disabilities receive services, regardless of parental or individual income. However, an important caveat is that if an individual is deemed to be independent and able to work, their benefits may be curtailed.

For more info, contact OPWDD’s info line at (866) 946-9733 or visit: https://opwdd.ny.gov/

Also, attend Rockaway Beach Autism Families monthly family support group meeting today, where we’ll be discussing the 2026 Medicaid Waiver guidelines through OPWDD—Thursday, April 9, 7 p.m. at Knights of Columbus (333 Beach 90th Street). Also, we’ll be creating posters for RBAF’s 4th Annual Walk for Autism happening on the boardwalk, Sunday, April 26, 11 a.m. For more info, visit: Rockaway Beach Autism Families on Facebook/Instagram.