April 18, 2025
The Boost News
By Roberta Bernstein, Founder/Editor, The Boost
My niece, Molly (not her real name) is a vibrant, highly verbal (just try to interrupt her), active 31-year-old who craves agency over the decisions that affect her. Like all of us, she wants to choose how she lives her life. Molly also has intellectual and developmental disabilities and, because of this, needs support to help ensure she makes the best decisions, a reality that frustrates her as much as it helps to keep her safe.
Self-Direction, available to those eligible for services through the New York Office for People with Developmental Disabilities (OPWDD) and enrolled in the Home and Community Based Services (HCBS) waiver, has been an integral tool in Molly’s toolbox since graduating from a post-high school transition program. The goal of SD, designed to be person-centered program, is to give individuals a say in their lives by allowing their Medicaid dollars to be used for specific needs and wants.
This has given Molly the opportunity to take community classes she might not otherwise afford, participate in new activities and to use transportation that increase her independence while allowing her to stay within her limited SSI income. (Of course, living on her SSI budget is another challenge.)
But SD comes with some strict rules and regulations, some of which make little sense in the real world. A major one is how it requires an individual to have someone in their life who can afford to pay upfront and wait for reimbursement, which makes the program unattainable for a decent slice of the population.
Another, which affects Molly directly, are the regulations concerning self-hired community habilitation.
Molly lives in residential housing, more specifically, a certified house operated by a NYS provider agency. She moved there after a stint in an independent living program, where it became clear she needed more support than the program provided. When she moved into the house, her SD budget was cut significantly.
When Molly advocated for self-hired community habilitation to help with her stated Life Plan goals, among them community integration — especially important as the house is somewhat isolated and there’s no accessible public transportation — we went for it, even though the budget only afforded 4 hours a week for 15 weeks total. A pittance, but it was something, right?
Miraculously, Molly knew of a lovely, highly capable Direct Support Professional (DSP) who was able and happy to work with her. She was ready to go.
Or so we thought.
OPWDD denied the request because the DSP, who has a job, couldn’t start until 4:30 p.m. This wasn’t a problem for Molly. It still gave her plenty of flexibility to work on goals, such as prepping and cooking meals in the house’s smaller, basement kitchen, and attending the Friday dance she loves to attend, a dance she sometimes can’t get to — despite paying in advance — because other residents are going elsewhere, and there’s only one DSP able to drive the van.
The problem is that SD regulations, working on a formula based on parameters set in the HCBS waiver, mandate that self-hired community habilitation for group home residents starts by 3 p.m., and on weekdays only. The reason: The IRA is funded for and required to provide services needs after 3 p.m. and all weekend, and a resident’s budget cannot duplicate Medicaid costs.
This might make sense in a perfect world. The DSPs in Molly’s house are miracle workers, dedicated to creating better, safer lives for our loved ones despite criminally low pay. But they’re tugged a hundred ways as they strive to keep residents safe and healthy, active and fed. They cook, clean, take people to doctors and activities, counsel, support a variety of behavioral issues, and so much more. An extra hand to help with Molly is a win-win for everyone, even for the small time it’s allotted.
For OPWDD to willfully create and adhere to regulations that result in the opposite of the SD program’s mission to provide flexibility in how she spends her allocated dollars is not just nonsensical, it purposefully prevents Molly from being able to reach her goals, and to thrive.
It’s hard enough for our loved ones to fight upstream in an ableist world that still sees people with disabilities as “other,” much less grapple with state and federal red tape that trips them up at every turn. OPWDD can and must do better.