With autism, there are threats that come from without, and threats that come from within. Number one external threat: cutting services. School systems. Adult services. Every budget season there are challenges we face on the government level, in the form of proposed cuts to services. This spring is no different; first we had to rally over the Governor’s proposed “9c” cut to Medicaid/Mass Health services in the form of Adult Family Care respite time for the caregivers. What in the world could they have saved financially speaking that would be worth denying 14 days vacation time for caregivers — people who work with those with very challenging disabilities and are responsible for their clients 24/7?
Soon after this proposal came the heinous Senate budget which cut, among other valuable services, Adult Day Program money for possibly 1,000 people who recently turned 22 (last hired, first fired I suppose). Other services to be cut: toileting and feeding assistance. So… let’s see. These people with intellectual disabilities with feeding and toileting issues will now have to — fend for themselves: Let them eat cake, or, uh, let them… hmm. Yeah. That’s what I thought.
Then there are threats from within. These are excruciating because they are directly about our child. Number one for me: what is Nat feeling? Is he okay? Latest thing: he is very quiet, slow, and still, like he is moving through water. He just stands there waiting for — what? And of course, no smiling in sight. On the other end, when he is not like this, he will suddenly switch to uncontrollable seemingly context-free laughter. Spitting laughter. So then we have to get him calm and more, well, serious, which then leads to — the still, quiet, somber Nat.
Where is the middle ground? Not just for my own exhausted heart. But for Nat. What is it like for him to exist this way, battered between so much up and down? How can I help him?
And by the way, when I ask that, it is rhetorical. I do not want any advice in the comments. Frankly, I hate other people’s advice. It so rarely fits our situation. It so often is something I’ve already tried. I honestly don’t believe anyone has the answers, and that is the way it has always been for Nat and us. We’re on our own and you are our supports. I only find it inside the autism community, but only from those with open arms and open minds.
Massachusetts families, advocates, and caregivers. Did you know that Mass Health is filing for a 9C cut, which in this case means WITHHOLDING 2 WEEKS RESPITE TIME FOR ADULT FAMILY CAREGIVERS???? This is unconscionable. Those that work with our guys need time off! Write to Mass Health if you can and tell them they must not do this. As Gary Blumenthal and the ADDP have told their constituents: PUSH BACK!! Protect our vital caregivers’ right to respite!
Note: Nat is not an AFC client but there but for the grace of DDS funding goes he!
Write to: firstname.lastname@example.org
Here’s my letter, just use it however you can.
Dear Mr. Tsai, et al.,
My son is 25 and has fairly severe autism. He is *not* an AFC user because he has had the “good luck” to be severe enough to warrant Priority One funding with the DDS. However, we had planned on using AFC in case we could not attain the Priority One. Since he’s been an adult, I have come to know others — younger families whose children are aging out of the school system — who will be applying for the AFC program. The AFC program is pretty much the only support for them, because DDS is strained and now the Autism Omnibus Bill has made it possible for *more* of those on the autism spectrum to apply for services. Yet, what are the chances that this newly eligible population will actually get anything, the way the DDS budget is?
So if families are lucky enough to get AFC, they can at least count on a small stipend for their work with their loved ones. They love their clients/disabled family members but the work is very very rough. I know this, from having my son live with me all the years prior to his residential move. Oh, how my heart broke to send him to live at his school. I still cry when I drop him off at his apartment with his caregiver. His caregiver is trustworthy and wonderful but he needs time off.
Don’t you get vacation time for your stressful jobs? Then how is it that you can file to suspend 14 days respite for AFC caregivers?? How can you possibly live with yourself doing that? What you need to do instead is work harder for the funds to support this respite. As people in charge of Health and Human Services, you owe it to your clients to advocate for them, not to reduce their lives.
You must do the right thing. Let the Legislature find the money somewhere else and do NOT take it from poor hard working caregivers!
Can I say this? I hate the fact that I have to pay for people to be with Nat. Pay someone to live with him, pay someone to work next to him at the supermarket.
Can I also say this? I am so lucky that I can pay for people to be with Nat and that there are good people for this.
But, this whole thing makes me very sad. I think about when I was in therapy, and how it stung that I was not actually friends with my therapist, I was basically a customer. A client. She loved me, I’m sure. But she was working when she was talking to me. She had a life that I was not allowed into. There was an utter imbalance, where she knew all about me, and I knew almost nothing about her. When I would run into her in a store, it was so weird! There she was, herself, an older woman with a handbag buying stuff! It made me feel almost sorry for her. Or embarrassed? Why? The mask of the professional her was off at that moment and there was just the skin of her face hovering vulnerably in space.
So what is it like for Nat? The age old question: how much does he know about his life? And whatever he does know, how much of it bothers him?
Here goes, the horrible question: Do people with disabilities sometimes feel inferior because of what they cannot do, because they must depend on others? Oh, how Ableist of me to ask that, but I want to know, I want to hear about it.
Or is it just like it is for me, where you do come to accept that there are services you require that you must pay for. Like seeing my doctor. Hiring a plumber. I can feel stupid and incompetent if I need someone to look at a hurt knee and tell me why it hurts, but I don’t. We accept that there are professionals in our lives to do for us what we cannot.
So — is that the reality Nat knows?
Or does he wish that instead of a paid live-in caregiver, he had just a roommate, a friend?
It is so painful but I have to ask. And of course there are no answers. Of course. That is the real problem of loving someone who has a profound disability. There is indeed mystery and you are constantly reminded of how terribly human (flawed, limited) you are that you cannot give this beautiful person exactly the life he should have.
“Should?” What is the truth here?