This is a post for the ages. I have been worried, and confused, and dreading, the OPWDD eligibility process for at least a year because of how confusing it all is. The website scared the pants off me, the litany of new acronyms were completely overwhelming, and I couldn’t get past the first form, which I just was not at all sure how to fill out.
In a moment of weakness, when feeling completely overwhelmed by CPSE meetings, evaluations, parent trainings and work madness, I asked Chris to “deal with it.”
And he did. He went to a “Front Door” orientation (which is step one, sort of). And came back with a binder and an hour and forty five minute audio recording (barely audible). Which (I guess) I was meant to follow up on because he didn’t actually understand anything from the meeting and then didn’t do anything for months and months. This was back in August.
Double middle fingers up!
Fast forward four months and I realized I had to take this thing into my own hands. Because Chris is an awesome dad, and incredible at a million things, but this—this soul-sucking DMV stuff—is not his strength. And it’s important.
And I should have known that. And we would have been four months into this process already, which is known to take a year or more. D’oh!
So on Monday night, I packed the kids up in the car and went to a workshop on how to navigate OPWDD at a local nonprofit, the Family Center for Autism, through which we already get services for M through my private insurance. It’s a great organization. And they had child care during the workshop, which was awesome. It always makes me nervous to leave M with untested caregivers, but since O would be there too, and these people know autistic kids, I charged O with keeping an eye on her brother and being the “helper” to the “teachers” that were there. And she loved the idea of being responsible and having a job to do. After a few attempts at eloping that were expertly thwarted, I felt confident in leaving the kids and headed down the hall to the workshop, which was excellent and left me feeling totally prepared to take this on.
So, here’s my takeaway on how to navigate NYS OPWDD:
Step 1. Attend an OPWDD Front Door Information Session. The sessions are 2 hours long and are offered regularly. Once you attend and sign in, you receive a “certificate of completion” (Chris went, said it was barely 90 minutes, but doesn’t seem to have this certificate. Sigh. I’m sure we can get one because they have a record of his attendance, but I may need to attend one myself).
Step 2. Contact one of three CCOs (Care Coordination Organizations). You can do this after, or before, attending the Front Door Info Session–it doesn’t matter. You just need to attend the session before applying for eligibility (so to me it makes sense to do that first). The three CCOs in NY State are:
Apparently, there is no real difference between these three organizations (yet) because they are all new — NYS just moved to this new system recently and so there is no “history” for any of these companies. So I chose Advance Care Alliance, because the website looked good and instead of randomly filling in a “request for info” in their “Contact Us” area of the website, they listed actual humans you can write to. And so I internet-stalked the three people listed as responsible for my region on social media and made a totally subjective judgment call about which person would be the best fit and most responsive.
The email I sent was as follows:
I hope you are well. I’m writing to request a Care Manager for my son, M, who will be turning 4 in just a few weeks.
I’m not sure how much information you need to kick off the process, so I’ll do a brief bullet list here and include attachments as indicated.
- M was diagnosed with ASD at 2 years old after a precipitous developmental regression.
- M is currently in a specialized preschool (through CPSE) where he is in an 8:1+2 classroom. He receives ABA therapy in our home 4x/week (through my private insurance) and takes a social skills class on the weekend (also through private insurance).
- We are primarily looking for the provisional OPWDD eligibility status kids can get prior to age 8, but would also like to attain a Non-Medicaid Care Manager so as to get on the road to securing Medicaid. We are looking for Medicaid so as to obtain additional services (e.g., specialized summer camp, some of which will only accept special education students with Medicaid).
- My husband has already attended a Front Door Information Session on our behalf. Attached is the completed Transmittal Form he received at that meeting (though I’m not sure if I’ve checked the right box in Section 4).
Please let me know if anything else is needed to begin this process and thank you so much in advance for your guidance on this. The process is complex and overwhelming, and we greatly appreciate any help you can provide.
I am available by phone at XXX-XXX-XXXX.
I’m guessing this was a good way to start, because here is the response I received the very next day:
Hello Teresa, I want to promptly acknowledge your email. Clearly, you have navigated the complicated system well so far. I am going to work with our intake department today on options as it sounds as though your end goal is to acquire comprehensive care coordination. Correct, M will need Medicaid to connect to those services.
I would like to give you some detailed information on the most efficient way to acquire these services, but need to consult with our ACA intake staff first.
You will be hearing from me within the next few days, if not sooner.
Thanks for reaching out!
I’m encouraged by this. It seems that I probably should have requested “Comprehensive Care Coordination” rather than the piecemeal request I sent, so keep that phrase in mind if you’re in the same boat.
Step 3. Along with the Care Manager, you must now fill in the gads of paperwork required to determine OPWDD eligibility. The Care Manager is supposed to help with this, but I am also attending a February 4th follow-up workshop at the Family Center for Autism where they will help to review our paperwork just in case. The first form is the OPWDD Transmittal Form. Along with this, you must submit the following:
- IEP from School (current)
- Psychological with Adaptive Testing — Note: one test for adaptive functioning that is widely accepted is the Vineland, which can be administered by a psychologist, but we had ours done by the BCBA at the Family Center for Autism when we applied for ABA services through our insurance (within 3 years)
- Psychosocial (within 3 years)
- Medical (within 3 years)
- CARS or ADOS (for Autism Diagnosis)
Once this packet of material is submitted to the local DDRO (Developmental Disabilities Regional Office, the local branch of OPWDD that handles cases in your area), we are supposed to hear back about eligibility within 3 months.
An important point to keep in mind about eligibility that isn’t clearly published on the OPWDD site in a way that’s accessible to laypeople:
Everyone at the workshop and on the FB pages keeps talking about the “scores” (adaptive and IQ). In order to be eligible, IQ must be 60 or below and/or adaptive functioning must be above 70. For our CPSE evaluation, we had the Bayley Scale done, which did show M’s IQ at 90 (hallelujah!) but he’s had both the Conner’s and the Vineland come back with a composite score of 70. Which is just one point shy of qualifying him, I think. So we may need to get another evaluation, since the latest we have is more than a year old and M has had a series of developmental regressions since then, so I suspect his adaptive scores have changed for the worse.
Step 4. Once determined eligible, you are able to apply for Medicaid for your child, which will be the funding source for all of the services your Care Manager will set up for your child. Your Care Manager will help you with this process.
Note: if the child is under age 8, you’re only getting provisional OPWDD eligibility and will need to reapply just prior to age 8 for permanent eligibility, or you lose it. It is my greatest hope that we will no longer need services for M after age 8, that he will make so much progress that he can function in life without supports, but that hope is growing smaller and smaller as he rounds the corner to age 4 and is still very severely impact by his diagnosis, not responding to his name or answering yes or no questions. But miracles happen, so I’m taking it one day at a time.
Step 5. Once you have eligibility and Medicaid, an OPWDD Front Door Liaison will conduct a phone interview with you (which could be 90 minutes – 2 hours long). Your Care Manager can apparently assist with this interview. This interview is to help guide the services your child will receive.
Step 6. Once you have eligibility and Medicaid and have had your interview, services can begin. Your Care Manager will work with you to set up services for your child and Medicaid will pay for those services. You will receive a PISP (Preliminary Individualized Service Plan) which needs to be submitted in order for you to receive your HCBS (Home and Community Based Services) waiver. This waiver funds the services through Medicaid. Your CM will send this packet to your local DDRO and then you will receive a NOD (Notice of Decision) noting whether or not your child has been approved for the services requested. Once approved and implemented, your PISP becomes an ISP.
In order to maintain services, there is an Annual Recertification process, which requires the parent to either go to a recertification meeting or rectify by phone each year.
Once your child turns 18, you would need to apply for SSI (Supplemental Security Income) benefits for living expenses, etc. as well as to maintain the Medicaid benefits, which would ride along with the new SSI (and becomes lifelong, so you won’t need to re-certify each year).
Since M is only barely 4, I didn’t tune in to the 18+ conversation. I don’t think I can fit any more acronyms into my head right now, and I won’t need to know those for more than a decade, at which point I’m sure the system will be totally different.
Hope this is helpful to someone!