If you can, please read this post when reading any of my posts on the developmental disability service system or the HCBS (Home and Community Based Services) waiver system. (You can click either of those links for all posts in each category. I might be inconsistent with categories but most posts on the topic will be in at least one of the two.) It will give you some background for what I mean by certain words and what I intend to accomplish.
People have been fighting all my life for the right of people with developmental disabilities to live outside of institutions, to receive services in our own homes. It is due to the efforts of such people that I am able to get the support I need to live in my own place. My entire adult life, I have been in the developmental disability system. I receive an HCBS (Home and Community Based Services) developmental disability Medicaid waiver that allows me to receive services in my own home instead of an ICF/DD (intermediate Care Facility for the Developmentally Disabled).
In the current political climate, it can seem important to praise this system a lot. Politicians want to take it away from us. We are all aware we could lose our lives or our freedom. Plus, whenever we talk about the rampant abuse and neglect in this system, there’s always some parent group (like VOR) ready to run up and tell us this is why people like us belong “protected” in group homes, larger institutions, rural farm-based institutions, etc.
Understand that if you use my words this way, if you use them to promote traditional institutions of any kind, you are misusing my words, without my consent. In fact, the problems that exist in this system come down to the way the system resembles traditional institutions. Not that it needs to be more like them. It needs to be less like them.
But there are problems that crop up in this system that I have seen happening to me and to others over the years, and they’re only getting worse. And I feel like it’s time for me to talk as much about what I see going wrong in this system as I can. So I am going to have a series of posts about the developmental disability service system.
I am 37 years old now. I could have raised a child to adulthood in the time I have been in the DD system. As an adult I have pretty much always been in the DD system in California and later Vermont. As a child I was more in psychiatric settings, but sometimes also DD settings or mixed psychiatric/DD settings. It is common in childhood for many systems to be combined together — the foster system, the special ed system, the psychiatric system, the DD system, the troubled teen system, and so on. Kids from one system will generally be in others, and many places cater to kids from many systems at once.
To be clear, I want to talk about what developmental disability means. It’s a vague term. It’s not really scientific. It refers to a group of people who have been historically grouped together, often by accidents of history and assumptions.
So it’s usually said to include those who became disabled prior to 18 (or sometime 22) and have a certain list of traits in common. But only for certain disabled people. So usually the list given of medical labels are intellectual disability, autism, some forms of childhood epilepsy, cerebral palsy, childhood brain injury, fetal alcohol spectrum, and anything that looks or acts a lot like these things.
I have been labeled with several different developmental disabilities in my lifetime. In talking about myself, I prefer to follow the standards of most of the self-advocacy movement by people with developmental disabilities. That is, I speak of myself as a person with a developmental disability, a person with developmental disabilities, or a developmentally disabled person. I don’t put a lot of emphasis on what label I have or anyone else has. I put more emphasis on what is happening to us, what our shared experiences are, what common goals we have, and most of all our shared humanity which has been denied us by just about everyone. That is how most self-advocates approach these things.
In writing, I use DD as an abbreviation for developmental disability. I use ID as an abbreviation for intellectual disability. ID and DD don’t mean the same thing, even though some people us them the same: People with ID have a DD but lots of people with DD don’t have an ID. Everything else I generally spell out. I use HCBS as an abbreviation for the Home and Community-Based Waiver system that allows me to live in my own home and receive DD services.
When speaking of ‘staff’, I am not using the word in a way most people are familiar with. To a person with a developmental disability in this system, ‘staff’ usually refers to the people who directly take care of us. These are not people with less power than us. These are people with a lot, lot more power over our lives than we could ever have over theirs. This does not make them evil. I get along with my staff very well. But it does make them powerful, more powerful than they often realize. (Since in the office hierarchy of the agency, staff are at the bottom. They forget that we’re under them.)
I also refer to us as ‘clients’ sometimes. It’s just a word people use for people with developmental disabilities who get services through the system. It’s not my favorite word, but everyone in the system knows exactly what it means, so I use it. To be clear, despite it sounding fancy, it refers to the people with the least power of anyone in the DD system.
When I talk about the DD system, I am talking about the system that provides services to people with developmental disabilities. I will usually be talking about the adult DD system because that is where I have spent the most time, and where I continue to receive services today.
I have a lot to say about the failures of the DD system. Nobody has my permission to use my words to support that idea that we just need more group homes, larger institutions, ICF/DDs, a return to the old days. Nobody has my permission to use my words to support the new kind of institution that is cropping up: They call them ’intentional communities’ a lot of the time but that’s misleading, they’re institutions. They are often in rural farm settings and they are designed for lots of DD people to live there, sometimes specializing in one particular DD label. These are still institutions and they are still destructive. We do not need a return to the old days. We need something better than what we have. Just about everything that goes wrong in the DD system as it is today, goes wrong because of similarities to more traditional institutions, not because we need more traditional institutions. The solution is to become less institutional, not to return to the old days. Do not use my words to promote any kind of institution. Not even those fake intentional communities. If you’re from the VOR, forget it, you won’t find a shred of support from me.
The reason I am talking about these failures is because they affect me, they affect people I care about, and they affect a lot of people who will never have Internet access and who most of the world will never even know exist. Things are getting worse. It is hard to discuss these failures because I feel as if I must always be grateful I am able to live in my own home because of this system. But the failures make a lot of the freedom I enjoy into a sham, and it’s even worse for others. So it’s important to talk about what’s going wrong in this system, and that’e exactly what I intend to do.
So this post is just the first in what I hope to be a long series about the adult DD system, HCBS waiver programs, and other things that affect my life as an adult with developmental disabilities who needs services. I may seem to talk about minor things one day and major things another day. I write whatever I can, whenever I can. I hope to write a lot. There are a lot of things that happen that are invisible to a lot of people. And they happen to people who are mostly isolated and invisible to the world at large.
Anything that is happening to me is happening to the other 670 HCBS clients of my agency in one form or another, not to mention countless others outside this particular agency. The issues are system-wide, not agency-specific, although some agencies are better than others.
I want to show what is happening to us.