Learn how you can support members of our community who will be testifying — or even testify yourself.
OPWDD’s Strategic Planning Forum
OPWDD is running Strategic Planning Forums. Sign up to attend one or to testify. Either way, we encourage you to submit a question, which must be done at least one week before the date of your forum. Dates and places are listed here: opwdd.ny.gov/strategic-planning.
At the forum, OPWDD will give a short presentation (see following pages), answer questions that they have selected from those submitted, and then provide those who wish with three minutes a piece for testimony.
Consider using your testimony time to ask that OPWDD answer a follow-up question—their answers during Q&A are almost guaranteed to not be satisfactory. Or if you are feeling assertive, you might decide to sit near the front and calmly raise your voice to politely ask for clarifications in real-time during the OPWDD answers.
Testimony
One way to give powerful testimony is to share your recent experiences, both positive and negative, and then connect that to a policy change you would like to see. Here is a list of things for you to consider testifying about.
What was it like to qualify for the HCBS waiver?
How smooth or bumpy was the transition from school to adult life?
What was your child doing before participating in Community Classes?
If you sought placement in a Day Hab program, how did that go?
Same for a supervised or supportive IRA.
Did you find certified services that were well matched with your adult child’s needs? What were the mis-matches?
How do you feel about the available housing options?
What happened when you tried to get a housing subsidy?
In brief, speak from your own experience, rehearse and edit to get it down to 3 minutes. Don’t try to fit in everything—focus on a key message, the one most important to you.
Questions to consider submitting
One can submit multiple questions. At the Long Island Forum in early May, they showed a willingness to answer lengthy, multi-part questions. We will be accumulating more suggestions for questions on this page.
Just as with your testimony, a great question is one that is rooted in your personal experience. Don’t use the names of individuals or specific providers. For example,
“My 25-y-o was sitting at home isolated for a year, with nothing to do, until I found suitable community classes. Now I am hearing that these classes might not be available for funding. Why is OPWDD pressuring the FIs to restrict access?”
“My adult child responds well to thoughtful behavioral supports—but in contrast rages when someone tries to boss them around. From what I have seen, the regimented life of a group home would send her into a tail-spin of rage. What other options are available to me?”
“My child is non-verbal. Who speaks for them, who represents their interests, when you are making decisions?”
“I finally got a self-direction budget, and cannot find anywhere to spend it. I’m told by older parents that there is a name for this-- we have an ‘empty waiver’. What do you suggest we do?”
Questions like those might be selected by OPWDD because they will be perceived as rooted in authentic personal experience. In contrast with those example questions, below are some that are divorced from individual problems. Instead thay have crafted to align with the formal language of OPWDD policy-makers. This makes it likely that they will pick them to answer. In list below you will also find an informal version for some of them. As a fun experiment, we could submit some of the informal wording!
Informal: Great, multiple languages. Now everyone can learn in their mother tongue ‘Why they ain’t getting’. What are you doing to actually help people get?
Formal: Translating forms and documents into multiple languages is a great step forward. And, aside from language, how will OPWDD be changing its policies to improve access to services, especially for traditionally under-served populations?Informal: OPWDD keeps issuing more and more rules, to attempt to control us. When are you doing to get around to focusing on giving us choice and control?
Formal: What is OPWDD’s vision for the future? Specifically, will the future state be as compliance-based as today? Will there be changes in the continuum of services available to people?Informal: Same as #2.
Formal: What is OPWDD doing to move New York toward better alignment with the HCBS ‘Final Settings Rule’?Informal: Some people are difficult to place because of their medical needs or their behavior, or both. What are you doing to make this easy? Don’t you dare say “high-needs funding” – my provider tells me that it is difficult to get, impossible to keep.
Formal: Supervised IRA providers report that obtaining high-needs funding is a lengthy and difficult process. As a consequence, they are unwilling to take on individuals who have high needs—especially those with high behavioral support needs. Has there been any analysis of the people who are ‘stuck’ on the Emergency list for more than a few weeks? Could OPWDD pre-emptively offer high-needs funding for such individuals? Is OPWDD considering providing high-needs funding levels to provide non-congregate residential services to people with high behavioral support needs?Informal: As a parent, it feels like you are making things harder and harder all the time. Are you even trying to measure the negative impact of the changes you are making? If you are measuring, then start sharing that with us, and start collaborating with us to make positive changes. If you are not measuring, then shame on you.
Formal: In the drive toward consistency, OPWDD has been issuing ADM after ADM. The anecdotal experience at the point of service delivery has been that this has resulted in making it more difficult to get access to services. How is OPWDD monitoring the system to find out how widespread these access problems are? For example, has the use of the housing subsidy decreased in the past 18 months? What became of those individuals who formerly had a subsidy and lost it? If the changes created access problems, how will OPWDD correct these problems?