SSI is Supplemental Security Disability Income. One of my uncles has a disability and gets SSI. I never thought I would be receiving it for an immediate family member. It made me sad, but at the same time I was thrilled that there were actually real resource to help me.
When Dovi started dealing with all of his sensory issues it was clear to me that I needed a lot of supplies. I wanted a swing, a pressure vest, a weighted blanket, chewy tubes, a vibrating teether - the works. All of this cost quite a lot of money. I wasn't ready to just put it onto a credit card; I really could have used funding for all of this.
First I tried to apply through Early Intervention's equipment program for a swing. Becca tried to help me, but after months of waiting I got a flat out no. So it was time for Plan B: Apply for SSI. I postponed it and postponed it as I was so busy with Dovi's needs and couldn't find the time to sit and sit at the Social Security office. Plus, I hate government offices of any kind and avoid them like the plague. So to actually have to sit there and be interviewed/probed by a government official gave me the heebie jeebies.
As for Medicaid Waiver, I didn't know where to start. There are so many agencies out there: Hamaspik, HASC, Human Care, Ohel, Otsar... I had no idea how the process worked or what to do to get involved. First I called Hamaspik and spoke to a really nice woman who told me that I needed two things: a Medicaid Waiver and a Psychological Evaluation with an IQ score. Getting the medicaid waiver was pretty straightforward; I believe I called Medicaid choice and spoke to someone who sent me some materials in the mail to fill out. Getting a psychological evaluation wasn't easy though. Surprisingly, Mrs. Hamaspik didn't really know where to send me to get the eval under our insurance - which is something so basic I thought a services coordinator would know that. Since it seemed so difficult to do - and she told me there are basically no slots for Res Hab at the moment anyway - I put it on the back burner.
SSI wasn't so hard to start; I went online, looked up what materials I would need, got tons of paperwork together, and scheduled an appointment at my closest social security office. Boy did I shlep along a pile of papers with me... all of Dovi's evaluations, proof of income, bank statement, the works. I waited and waited for a long time until I was called, and I was relieved that my agent was a really sweet, young Asian fellow who was extremely polite and even almost apologetic with his questions. My mother picked up Dovi, as we were running over time and the ABA therapist was leaving. All in all it was an okay experience. However, two weeks later I received a letter in the mail asking for additional documents - documents I had definitely already provided. So I shlepped down to the Social Security office again, in the middle of a slick ice storm, and waited... again. Forever. After a good hour of waiting I finally discovered that I had signed in as an appointment when I was a drop-in, and by then there was another hour of waiting. I was near tears and simply walked over to the nearest empty window and explained that I just had to drop some documents off and really had to be on my way to pick up my disabled son from therapy. To my relief they were pretty nice about it, took my documents, and sent me on my way.
When I finally got my acceptance packet, and the shiny $600-something check in the mail a month later, it had all been worth it. The possibilities were huge; suddenly I could afford to buy Dovi the world (almost). I went on an incredible shopping spree at school specialty and Therapro. But that's all for the next post.
The First of the month remains my most looked-forward-to date. I barely wait for the check - now $721 - to arrive so I can put it to good use and buy Dovi the things he needs. The constant letters to send in pay stubs and the annual review are a bit of a pain, but it's worth the money. At first I would cash it and use the cash; later I started putting it into a prepaid debit card; only last month did I put it into a bank account and link it up with my PayPal account so I could use the debit card to buy Dovi his stuff. SSI is a godsend; anyone out there reading this with a disabled child should be smart and set up SSI. If your child really qualifies, you'll be approved, and you'll find the extra money very, very handy.
Now back to the Medicaid Waiver business. Incidentally, I had not really even needed to apply for a Medicaid Waiver, for every child who gets SSI automatically gets a medicaid waiver. Medicaid waiver essentially means that your child gets to go on straight Medicaid, whether you qualify for medicaid or whehter your child already is on Medicaid but on an HMO, like Dovi was (he was on HIP). Straight medicaid has its pluses and minuses; it is often really hard to find specialists - I cannot find a pediatric ophthalmogist who takes it - but his pediatrician takes it, as does his psychiatrist, neurologist, dentist, and so did the Emergency Room and the Burn Clinic. Being on straight Medicaid allowed him to qualify for a Home Health Aide, for Ambulette Transportation to his appointments (although at this point I believe all the Medicaid HMOs provide transportation, through Logisticare.) So if you have a child with a disability, even if you can't seem to get any Res Hab slots, it still pays to get a Medicaid Waiver because there are loads of other services available. There is Respite, and all of the above-mentioned little perks.
Let me segue here into introducing you to my friend Frieda. Frieda and I are like chalk and cheese. I was the brightest girl in the class; she struggled a bit with her schoolwork. I was one of the quickest-moving kids in my class; she walked slowly and talked rather slowly, too. We were never very good friends. Suddenly we got engaged a month apart and got married days apart. By default, we ended up talking more often than before. Then... as fate would have it, both of us struggled with infertility. So she ended up being the only classmate I could have a decent conversation with. She was blessed with her child about four years before I was, so our relationship was slightly strained; but once I became a mother we picked up where we left off. When Chaim was a year old, she had another baby - a preemie. Suddenly we were speaking the same language again; early intervention, occupational therapy, the works. What I didn't know, however, was that her preemie had a serious physical issue going on which she did not discuss with me. I had heard about it through the grapevine but never asked her a thing. Then Dovi was diagnosed with autism, and she was one of the first people I opened up to about what was going on.
"I can understand what you're going through," she said after a moment of silence. Suddenly the floodgates opened and she began describing what the last three years had been like for her; a revolving door of therapists, shlepping around to therapy centers, and so forth. She was a treasure trove of information and resources. I was stunned with disbelief that once again our lives were intertwined and we were sharing a 'situation'....
Frieda was the one who told me about Support by Design. She was also the one who began urging me to get Medicaid Waiver. She told me of a little known secret: The Clinic where I go for weekly therapy - although at that time, I had not yet started going yet - also has a small division for children with disabilities. They have one Medicaid Services Coordinator and one Res Hab coordinator - but they are extremely devoted and bend over backwards to help their families. She also told me that an excellent resource of information would be Pearl, who is the director of the Sunday and after-school Respite program at the Clinic. I couldn't believe it - I nearly banged my head in frustration at how I had not noticed the obvious!!!
Pearl had been one of my first "infertility" friends, many years earlier. She had gone on to have three children, and we had lost touch. But we still had a soft spot for each other and shmoozed when we met on the street. How had I not known about her involvement in the special needs world?
I called her that very night and poured my heart out to her. She was absolutely stunned, and devastated. Anyone who hears that I was dealing with autism and special needs after all the years I had struggled with infertility has that reaction. She immediately began encouraging me to call Marilyn, the Res Hab coordinator, and get some information about getting services through them. (She was also the one who was able to give me some information about Linda, my therapist, before I started, which made me more comfortable to go to her.)
I called Marilyn, who knew me very vaguely through some family connections. I asked her what the process was, and I also wanted to know about confidentiality - I wasn't really ready for Dovi to become a "case", and a name on the special needs scene. I was also very worried because Jenna the Medicaid Services Coordinator is a family friend and related to one of my mother's closest friends, and I was reluctant for her to know all the details yet. Marilyn assured me that there was confidentiality, although it wasn't perfect; obviously Jenna would know details and so would she, but she tried to impress upon me how that was not important in the grand scheme of things, the main thing was to provide us with services. She also told me that unfortunately there were no slots at the moment and she had no idea when there would be any openings, but we would be in touch.
A few weeks later - on a random day - Pearl suddenly called me and asked me for Dovi's date of birth and social security number. I was reluctant to give it to her, telling her I wasn't really ready to jump onto the Res Hab wagon. She begged and pleaded and even sent Frieda to convince me. She explained that there was a sudden opening at the OPWDD (then known as the OMRDD) for five Res Hab slots and she really wanted Dovi to have one of them. I was extremely touched by her caring, and humbled by the irony of them chasing after me to join, instead of vice versa!
For a few months I didn't hear back from them, until one Thursday afternoon when two of Dovi's therapists had inexplicably canceled and I was trying to keep him busy at home. Marilyn called me. It was 2 p.m., and one of the psychologists the Clinis works with to get psychosocial evaluations had a sudden cancellation. Could I be in Boro Park at 3 pm?
I couldn't believe the hashgacha pratis, the Divine Providence in this. Two of his therapists had canceled, enabling me to turn off the raw Shabbos food, jump into a cab, and zoom off to a mental health clinic in another neighborhood to grab a coveted slot for an evaluation -which wouldn't cost me a penny, as they took HIP Medicaid (I hadn't gotten the Waiver yet). Dovi did not behave at all, overturning plants and running around all over the place and even turning on the office-wide intercom, prompting some of the practitioners to come in with concern as they had heard some not-too-exciting noises going on over the loudspeaker! (I think they may have heard me crying in despair.) When we finally were seen by the psychiatrist, Dovi was bouncing off the walls and scored very low on the IQ test. (It had to be below 70). I made arrangements for Chaim to stay with a neighbor until we arrived home - and this big huge hurdle was behind me. I now had all the paperwork I needed to get a Provisional ISP from the OPWDD.
It took a very, very long time to get approved. I later heard that of the five families the Clinic had handed in for approval, only 2 got approved, Dovi being one of the 2. And we had only been awarded Five measly hours a week of Community Hab. But as I said, Marilyn goes out of her way to help her consumers, and she managed to get more than that for us.
We finally got approved for June 1, and the hunt for the perfect Res Hab girl was on.
Boy, do I have a lot to tell you about that.
But you'll have to wait.
If anyone reading this is the parent of a child with a disability and lives in NY and wants more detailed information on obtaining SSI or Medicaid Waiver services, feel free to contact me.