Susan's Blog

Sunday, September 10, 2006

My Kingdom for a Home Program

I’ve been thinking a lot about Nat’s home program, which currently is spotty (read: non-existent). My reasons for the spottiness are manifold: the good person we had was no longer available; the next best person we had stopped returning my calls and emails; most organized special needs activities are suspended during the summer; lack of money; intertia; lack of good ideas of what hired person can do with Nat during a session; despondency; Nat already has speech/language therapy once a week after a long school day so our town was ill-disposed to give us more, after also paying for his expensive private school and transportation there (around $100,000 for my town).

But a series of events occurred that were unrelated but flowed together in a certain way in my head, illuminating one particular truth: Nat needs a home program right now, even if my town does not agree and the state has me on an eighteen-month wating list for the funding! I am getting desperate for this; see MPWA for details about what happens when I start to feel this way about Nat.

What happened was that first I got tired of his utter passivity, so I began to think that he needed to come down a little from his Resperdone dose; his aggression has diminished so consistently (knock wood) for so long that it seems ridiculous to have him on 1 and 1/4 .25 mg. tabs in the morning and 1 and 1/2 in the evening. I always like to think that he has evolved, relearned certain destructive behavior patterns (although God knows how hard that can be, just see past blog posts; maybe it is easier for Nat, who is younger and a different person from me!)

No adverse affect from the reduction so far. Next, I had a phone call from a friend who has a kid Nat’s age and is very savvy in terms of making things happen (she successfully sued Boston Public Schools for all of his needs, need I say more?) This friend of mine told me that her son was getting behavioral consults at home from this great woman, (L), and it turns out she is the one who worked with Nat during our crisis time! The wheels started turning.

Then I called L and we had a meeting, which was very dynamic and exciting. I felt my energy levels rising and my heart starting to float like in the old days when I would get an idea of what Nat needs to do. I thought, “why the heck don’t we start with L right now, find the money, just do whatever Nat needs?” I asked my friend why it was that older kids like ours don’t automatically have home programs — there is no Late Intervention — little kids get so much more nowadays, the 30-hour home programs, easy access to speech/language pathologists, more private schools to choose from. Why is that? My friend said that the research is all about the little kids and how the early interventions are key, etc., and no one has done research about how the older kids benefit from home programs in addition to school, just like the little guys. I said, “Well, duh! The next 5 years could make all the difference for Nat in terms of independent living! Isn’t that just as important as when he was 3 and had to be potty-trained?”

So today I have a meeting with a young woman who seems very smart and capable and experienced, to see if she can work with Nat on communication and independent living skills at home. I have another meeting with L next week to start to set up the whole thing. I’m talking 6 – 10 hours, that’s all.

But some day soon, in the back of my mind, is the other big fantasy, whereby I put Nat in our local high school for a part of the day with some very qualified teacher/aide, and he gets the vocational and inclusion piece there (our high school has a restaurant, a greenhouse, a printshop, a construction site, an auto mechanics course — lots of potentially good voc ed training, plus our community is literally right next door to Boston and Route 128 high tech). The other part of the day he would be working here, and out in the community, with his one-on-one, the same qualified, humane and fun person, on anything he needed to work on, primarily communication and learning how to function in the world on his own: social scenarios, home alone scenarios, money, traveling, safety, telephone use, self-care, leisure activities. All of this using techniques such as PECS and Verbal Behavior, and Good Old Common Sense Interpersonal Connecting, (GOCSIC, no link because I made it up) which Nat responds to pretty damned well.

With what money will all this occur? For now, we have a little bit from the state for respite. That will run out in 12 weeks. What then? A loan from my loving, but retired parents? Ned’s family? A waitressing job for me? (hey, don’t laugh! I waitressed all throughout college to pay my way through!) How about a book project??!! Maybe I should check out Investors Choice Lending website. I hope to have my town on board by then. How could they possibly refuse a small home program for Natty just on the basis of his age? His need is so great. And his potential is, too.

And I will not take NO for an answer (see book, etc.). This is my kid. Don’t f*** with that. Grrr.


Susan, Charlie is on SSI and because of that he automatically gets a state medical card through PA which pays for all of his therapy, wrap around, etc.

nI know that not all states are the same, but this medical card is not linked to our income, so he has it forever. It was not too hard to get him qualified for SSI, it took months, but it was worth it.

All it takes is the diagnosis of autism and then for Charlie, everything else fell into place. Even if you don’t qualify for the SSI cash portion (which most people don’t) the other benefits are good. Our private insurance does not pay one cent toward anything autism related. It is a crime.

Also, have you spoken with your Center For Independent Living in your area? The CIL’s are a great resource for info regarding disability advocacy, especially when dealing with teens and adults, not so much with little kids.

I hope that you get it ironed out. I feel that even though it is trite, whenever God closes a door he opens a window, maybe this home program is your window?

People with older kids and adults with autism will have to spearhead the fight for those kids to get services and those of us with the little kids need to back them up, because these kids need the help and they need it NOW. They need continuing intervention and it’s time that the government/school systems started seeing that.

— added by Mom on Sunday, September 10, 2006 at 8:29 am

Hi Susan,
Our 15 year old daughter gets CLASS. It is a Community Living Assistance program. She will be on it the rest of her life. She gets 40 hours a week for an attendant, plus therapies. We were on a rather long waitlist, but it was worth the wait. Before that we received funding through the county Mental Health Mental Retardation center.
Our other children get the MHMR funding. All of them are receiving SSI.
Therapies are so expensive. When we had private insurance for our children, they refused to pay almost everything. We spent both our retirement funds, our savings and our bonds. We are now just living paycheck-to-paycheck. Really scary…..

— added by Mom26children on Sunday, September 10, 2006 at 9:40 am

Hi all –
It is really different state-to-state. I’ve been told more than once that SSI is not for Nat. I will look into it again but I’m sure that one of my savvier buddies would have mentioned it by now if it or “CLASS” were an option. D’oh, as Homer Simpson would say.

— added by Susan Senator on Sunday, September 10, 2006 at 12:04 pm

As our Lovaas consultant told us, “Early intervention means high school and beyond.”

— added by kristina on Sunday, September 10, 2006 at 2:19 pm

It is funny you should be writing about this now. We are implementing a program where our daughter is in school in the morning then we are “homeschooling” in the afternoon, which really means getting her high quality art and music experiences as well as hiking, biking, tutoring, swimming and horseback riding.

We finally figured out the school was useless to her after lunch and a total waste of her time. She is much better served by the unconventional resolution. Was her school happy? No. But even her teacher has to admit she is much happier and doing significantly better in class in the morning.

We need to think outside of the box for our kids. Their needs are different.

My daughter seems really grateful that we ave (finally) figured this out!


— added by Anonymous on Sunday, September 10, 2006 at 2:40 pm

I am wondering what a few hours in public high school/vocational classes would do? It is never to late to do the home program again. This is a journey that finds us starting over with methods, stopping, starting new, trying old ideas, etc… You have been doing Nat justice all along, and you have been and will always be his best advocate.

— added by Laura Cottington on Sunday, September 10, 2006 at 5:02 pm

I have not much more to add to these responses except to say…Gosh, I hope this works for Nat! Keeping my fingers crossed.

— added by mrs. gilb on Sunday, September 10, 2006 at 6:27 pm

I am experiencing summer lag with my son as well, and he is only 35 months old. I just moved from a community with money, but no resources, to a community with resources that shut down during the summer, and no Katie Beckett waiver (translation: Medical coverage deeming waiver for the developmentally disabled) or respite (not considered an entitlement here). Sometimes I wonder if I did the wrong thing – especially when he is having rough, stimmy, non-eating days in the summer, but I know that having expensive and limited services is far better than having services on paper and lots of respite. So here we are, no insurance, I an unemployed graduate student, and a set of twins…and only the remaining proceeds of my home sale (never a homeowner again) to buy him the services he deserves.

I can only imagine how much more stressful it would be with an older child…at least I can play upon the statistics proving early intervention is necessary. Perhaps you can get some leverage with NCLB being tossed out there?

Good luck.

— added by Susan on Tuesday, September 12, 2006 at 3:21 am

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