Autonomy First! Accessing Good Supports Without Sacrificing Your Independence

Spectrum Disordered
www.facebook.com/asdisordered

We’ve all heard or experienced horror stories about accessing services and supports. Often the idea of receiving services for people with intellectual and developmental disabilities (I/DD), including autism, conjures up images of institutions—visions of Willowbrook. Or, ideas of what is “optimal” for us look like segregated lives, or “intentional” communities where the true intent is to lump us together under the guise of “keeping us safe.” Regularly, the idea of seeking supports to live in one’s daily life carries an expectation that the cost will be any and all independence and autonomy in having positive control over that life.

These fears are rooted in fact and truth, both of how things were and in some cases, continue to be. But that does not mean they are a universal truth! There are a lot of really great disability support providers out there! Unfortunately, there are also plenty of poor ones, and it can be difficult to identify which is which. Hopefully this piece helps with that—to help root out whether a service provider you are considering is going to provide support in a positive way that allows for growth and confidence, or seek to lock down a person’s life.

First, a little about me and where I work. I’m autistic. I live in Western Colorado, where the mountains run to desert. I volunteer as an adaptive ski instructor, I am newly certified as an Person-Centered Planning trainer, I run support groups, do a lot of public speaking, and am dedicated to advocacy for autistic people and the disability community as a whole.

At a party, how can you tell who the ski instructor is?  
Don’t worry, They’ll tell you.
Photo © the author
[image: A snowy forested mountain slope.]

For the past few years, I’ve been employed as a case manager for a non-profit that provides Medicaid Home and Community Based Services for people with intellectual and developmental disabilities (IDD) across Western Colorado. Our service area is larger than the entire state of Connecticut.

In our rural, isolated, rugged (and very snowy) area, we are the sole provider for most IDD related HCBS-based services. We have no institution. We have no ranches thirty miles from the nearest town. We have no sheltered workshops. We have no group homes. Everyone we support lives in their communities—in either their own homes, with family, or in host homes, where a person or family provides 24-hour residential support to the person.

Our Neck of the Colorado Woods
Photo © the author
[image: Snow-capped mountain peaks seen through a forested valley.]

The employment rate for people we support is far, far above the National average for people with disabilities, yet depressingly low compared to the general population :(. The agency I work for is not perfect: We don’t get everything right every time, but as somebody who has experienced the trauma of losing my autonomy due to my disability, I can work for my agency and still look at myself in the mirror.

We reject the notions that institutional living, sheltered workshops, and segregation are anything other than relics of the past; we reject that that these practices serve any needed role, and believe they exist as historical appendages like the appendix in our own bodies. Our agency doesn’t need them, we support everyone, and WE AREN’T SPECIAL OR MAGICAL.

It is worth noting that Colorado is in the bottom five of the 50 states in Medicaid HCBS funding, so we definitely don’t have extra resources that allow us to avoid old-style segregated supports that others defend as “critical” and “necessary.” This is because, believe it or not, providing community based services actually costs less than warehousing people in institutions.

We provide services to live in your own small, snowy community.
Photo © the author
[image: A snow-covered small town downtown street.]

Without any more long-winded intro (my autistic superpower is giving 15 minute answers to 5 second questions), here are a few things I have learned that people should look out for when seeking services. (Note that this is written for an audience of both people seeking services themselves, and family members helping somebody line up support, so my word choice alternates between “you” and “the person.”)

Without further ado, this is my advice for things to notice when looking for service providers, of which I use agency interchangeably.

1) Reject agencies that expect or require the person to turn decision making authority over to them, in the form of guardianship, powers of attorney, or (to a lesser degree) representative payee agreements.

This is a HUGE red flag. If the agency/service provider as a matter of course expects to be given the authority to override the person’s wishes and decisions, they are showing no interest in supporting autonomy whatsoever. For parents of minor children, this can also take the form of the parents being asked to sign over guardianship of the child to the service provider.

A less-extreme variant are service providers that assume a person has a guardian, or they make blanket recommendations that people with IDD should have guardians. I hear parents told frequently to “make sure you have guardianship when your child turns 18 or you will have NO SAY in anything they do!” If a service provider is encouraging people’s right to make decisions be taken away as a blanket recommendation, it is pretty clear they are not interesting in respecting a person’s wishes when providing services.

Representative payee arrangements are similar. A representative payee arrangement establishes that another entity, in many cases the service provider, can manage your Social Security income and use it to pay bills on your behalf. If the representative payee is your service provider, this means they could be using your Social Security income in some cases to pay themselves for services, like housing. This isn’t automatically inappropriate (we provide representative payee services to many people we support) but it should be a CHOICE for the person who best to handle their finances—themselves with or without support, a third party rep payee, or the agency. An agency that is pushy about wanting to handle rep payee duties themselves should be regarded with LOTS of suspicion.

Positive signs to look for: The agency looks to exhaust all other avenues to support a person’s decision making (such as supported decision making). The agency refuses to consider having decision making authority for a person they support vested in themselves.

2) Ask the service provider how they support your rights!

In every state I am aware of, people with intellectual and developmental disabilities have specific additional rights, due to the awful treatment we have been subjected to in the past. By way of example, see this easy-language version of California’s rights for people with IDD.  For your state, Googling “[State Name] rights of people with intellectual and developmental disabilities” should bring up documents reflecting rights enshrined in law for your state.

A service provider should have these rights memorized, should be able to educate you about your rights, should be able to provide you documentation of what those rights are, and should be able to provide you with specific examples of how they uphold these rights and how you can report if you feel your rights are not respected.

Be very concerned if a service provider shows a limited awareness or hesitancy on any part of the above. It is impossible for an agency to respect your rights if they aren’t well-aware of them. If the response you get to this line of questioning is “Oh yeah, we have a handout on that somewhere,” be concerned.

Positive signs to look for: The agency shows a deep understanding of the rights of the people they support, has resources to train and educate you about your rights, encourages advocacy, and has effective processes for you to report violations.

3) For adults, ask the agency about providing supports for adult lives.

Many agencies will talk a good game about how much they care and how hard they will try to support the person to do what they wish to do. But what are they really prepared to do? I’ve found a really good way to “peer behind the veil” is to ask about “adult” support and evaluate the response.

Some examples include asking if a person can be supported to go to a bar and have some drinks while listening to their favorite type of music. Or, that the person wishes to date and would like support to setup and manage an online dating profile.

A bad response is one that makes it clear the provider/agency has not considered the possibility of adults being adults. If a provider is dumbfounded by the line of questioning or indicates they would not support somebody to do “unsafe” or “unhealthy” things that are the full prerogative of adults to do, red flag. The conversation should revolve around what supports the person needs to do what they wish with their lives AND manage potential risks.

A mediocre/poor response is one that shoehorns the person’s interests into “safe” group or segregated activities. Examples would be “We have dance night at the day program site and serve non-alcoholic beer!” or “ You can join our “dating group” with your “peers” to “learn about relationships” and “maybe find somebody!”

A good response to these questions is one that works out logistics, showing the provider is well-versed in real adult-support needs. Does the person have a favorite bar? Favorite band? What online dating service do you use, and what is the best way to support?

4) Watch for possessive language.

Be wary when a service provider uses possessive language towards the people they are paid to support. Some examples are “On this day, OUR people do this activity” or, “We LET OUR folks do this thing this many times a week” or, “OUR guys usually don’t want to…”

There are several issues.here. This attitude indicates that the agencies views themselves as principal in the power dynamic—that they have the power to “let” people do things, instead of the individual person having authority and agency over the support they wish, and what they wish it to do.

Possessive language perpetuates an “us vs. them” culture, and the idea that people with disabilities can be treated differently than the “rest of us.” It exposes paternal/maternal ideas about having power over somebody.

Possessive language of this type may indicate the agency is structured with more regimented group activities established by the agency rather than the people supported.

Positive signs to look for: The agency focuses the conversation on what YOU are interested in and what YOU want. Discussion should focus around what YOU want to do, instead of what “OUR PEOPLE” do. Discussion of support should be based on your interests and wishes. If you want to join with other people that also want to take an art class, great! If everybody that gets support on a given day is expected to either be idle or take an art class, less great.

5) How does the agency match staff with the person?

A good match between you and the person hired to support you is CRITICAL. Support staff that match your personality result in better services and supports. Better matching helps prevent “getting in a rut” with services. A good match with support staff means it will be easier for you to direct and drive the services you receive, because the person will be more open to respect your wishes.

Conversely, a poor match with support staff makes it tougher for you to assert your authority to drive services. A poor match often makes the support staff unhappy too, resulting in more turnover—putting you in the cycle of repeatedly training people on how to best support you. Worst, a poor fit between a person and their support staff make it much more likely that abuse will occur.

The worst case is no attempt to match. Be wary if a service agency uses a “pool” of people to support you based on who is available. Providing support to somebody is an intimate endeavor. The person needs experience to effectively support you, and needs to develop trust with you. An agency that arranges staffing as if you are a commodity rather than an individual person seeking individual supports should raise concern,

Positive signs to look for: Look for providers that arrange for you to meet and interview the primary staff that will be supporting you. Look for agencies that ask you about your personality and preferences, and provide details of the personality, preferences, and interests of potential support staff. If a new staff person will be hired to support you, will the agency include you in the job interview process? What if you don’t get along with a support staff? Look for agencies that support you to stop getting support from a staff person you don’t like, even if they don’t see the issue the same way.

What if none of the providers in my area have many of these “Positive signs to look for?”

Advocate for change! Talk with your local service providers, and engage them in a discussion of ways they can improve. Many non-profits are looking for board members—apply and drive change from within.

At the Federal level, Medicaid rules require agencies to provide person-directed services, and will shortly require that Medicaid services be selected using Person Centered Planning guidelines, much of which require provider agencies to consider the above issues. Much of this is included in what is referred to as the “Home and Community Based Services Final Regulation,” details of which are available here: https://www.medicaid.gov/medicaid/hcbs/guidance/index.html.

Finally, talk with your State elected officials and advocate for increased community-based support! As mentioned, costs of providing community-based supports are often far less than institutional-based services.  Partner with advocacy groups in your State to educate lawmakers on the benefits of increasing community based services.

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How Does The HCBS Settings Rule Affect Housing and Day Program Rules and Rights?

Painting © Tracy Booth | Creative Commons/Flickr
[image: Painting of a tiny home with a red roof with
white spots, and a lantern, under a crescent moon]

Many of our U.S.-based community members, including parents and caregivers, want guidance and clarity about how the impending Home and Community Based Services (HCBS) Settings rule will affect both adult housing choices and adult day programs.

So, we spoke with policy expert Julia Bascom, Executive Director of the Autistic Self Advocacy Network, who explained in plain conversational language how exactly the new HCBS Settings rules will affect housing options, how some common misunderstandings about the rule happen, and why the rule is essentially about trying to ensure adults with disabilities have the same basic rights as non-disabled adults do.

Thinking Person's Guide to Autism: Why was the rule enacted in the first place?

Julia Bascom: The HCBS Settings Rule sets ground floor, baseline standards for what qualifies as home and community based services (HCBS). Unlike institutions, which have had basic rules to adhere to for decades, these standards have actually never existed in an enforceable way for HCBS. This has contributed to the problem we're all very familiar with, where "community services" like group homes or day programs can end up being mini-institutions. The settings rule is trying to fix that.

This is important, so I want to dwell on it for a minute. Right now, if someone is on Medicaid and has high enough support needs to qualify for services, they are entitled to receive those services in an institution. That entitlement means there isn't a waiting list—if you need services, you can get them right away, as long as you are willing to give up your freedom and your life in the broader community.

And that's an unacceptable trade-off to ask people to make. By their nature, institutions are extremely restrictive settings. People living in institutions don't get to make their own choices. They have to live by the rules, schedule, meal plan, and decisions made by the instruction. They are segregated and isolated, and that makes them less safe—institutions are hotbeds for abuse and neglect.

In contrast, decades of research shows that people with disabilities living in the community make more choices for ourselves, have a better quality of life, are safer and more included in our communities, live longer, and maintain and develop more skills—and this is true regardless of how disabled a person is or how intense our needs are. Community settings are vastly preferred by people with disabilities and our families, and over the last three decades, there's been a huge push to move people from institutions into the community.

But Medicaid rules haven't kept up with that progress. For example, even though there's no waiting list for a spot in an institution, states are allowed to have wait lists for HCBS. These wait lists can last years, or even decades in some states. So if someone chooses to receive HCBS, they have to waive their right to receive services in an institution (that's why these services are often called "waivers") and then spend years foregoing ANY services while they sit on a waitlist. And right now, over 600,000 people with disabilities and families have made that choices and are currently sitting on a waitlist, with no services, waiting for a spot to open up. That's how popular these services are. That's how badly people with disabilities, including people with the most significant disabilities and our families, want to live in the community.

But prior to the rule, something hideously unfair kept happening. A person with a disability would choose community instead of an institution, spend years on a waitlist without any services, finally get a waiver slot—and end up in a group home or a day program that was exactly like a miniature version of an institution. People theoretically living in the community nonetheless had no choice or control over their own life. They were still segregated and isolated from people without disabilities.

And that's where the HCBS Settings Rule comes in. The rule doesn't close any institutions. If someone wants to live in an institution, they still have that choice. What the rule DOES do is say that if a setting is getting paid to provide home and community based services, they need to actually provide home and community based services.

The new standards in the rule are wild [sarcasm] things like: you can't withhold food from people. The person with a disability gets to make our own schedule. We get a choice between living with other people with disabilities, or living in our own home—and if we chose a group setting, we get to chose our roommate, decorate our room, and lock our door. The rule says we have rights that non-disabled people get to take for granted. That's all. That's the whole thing.

It's also important to point out that it took years to make this rule. The federal government received thousands of comments from people using services, providers, and families, and they had to respond to each and every one. The final rule is a compromise. It sets minimum standards, and it doesn't go as far as self-advocates wanted. Having the right to lock your door or eat when you're hungry isn't radical stuff—it barely scratches the floor of what disabled people deserve. But because the process was so comprehensive, and because the rule does for the first time establish that people receiving HCBS have basic rights, it's supported by the vast majority of national organizations representing people with disabilities and our families, along with hundreds of community providers. It's just a start—but at least we're starting.

TPGA: How long do states and providers have to come into compliance with
the new rule?

Bascom: States and providers have until 2022 to come into compliance. Since the rule was released in 2014, that means they'll have had a total of eight years to get up to speed.

TPGA: Will all adult programs have to change?

Bascom: No. If a community service is good—if it respects people's rights, supports our inclusion in the community, and makes sure that people with disabilities are in charge of how we spend our day—it won't have a problem. If it's not good, but wants to be better, it won't have a problem. If a setting is really dedicated to keeping people with disabilities segregated and subordinate, then it will have to decide to either change, or to find another source of funding.

There's a very limited amount of funding for HCBS services. That's why we have waiting lists. The point of the settings rule is to make sure that those limited dollars are being spent on services that really are home and community based, not services that are just institutions with a new coat of paint. If a setting doesn't meet criteria for HCBS, it can look for institutional funding, or it can switch to private pay. Or it can treat the people it purports to serve fairly. It's up to them.

TPGA: How does this affect adult programs that appear institutional in nature?

Bascom: One of the things that we really like about the rule is that the rule is based on the experiences of people with disabilities living or spending their days in a given setting. So it doesn't do things like set limits on the size of a setting by itself. At the same time,  the rule recognizes the decades of research and lived experience which show that certain types of settings—large congregate settings, or settings that clump a lot of disabled people together and provide a lot of services in one place—are more likely to function as an institution that not. The rule calls these settings "presumptively institutional" settings, or "settings that isolate."

But these settings still aren't banned by the rule! States have a choice. A state can decide to look at settings which, on their face, seem institutional, and give them a chance to prove that they are in fact HCBS. They have to use a process called heightened scrutiny, in which the setting demonstrates that it meets all the criteria. If a setting can prove that the people living there really do keep all their rights, and really are integrated into the broader community, it can keep its HCBS funding. Since the standards are so basic—again, can I eat when I'm hungry, can I lock my door, can I spend my time how I want—this should be pretty easy to prove. If a setting can't meet that baseline, it has no business calling itself HCBS.

TPGA: Does this mean that all clients of adult programs will have to adhere to the same rules without exceptions? What about individualized and competing access needs?

Bascom: Nope! If someone has a disability that means that a certain part of the rule won't work for them (e.g., unrestricted access to food for someone with Prader Willi,) the rule has an exception process that can be done as part of person-centered planning. The flip side, though, is that my exception can't impact someone else's services. If I need to eat on a specific schedule, for example, my provider is no longer allowed to make the whole group home follow that schedule. It's all about what I as an individual person need.

TPGA: How are HCBS rules affecting adult day programs different from those affecting residential programs?

Bascom: There's more clarity around residential services than day services right now. States have a huge amount of flexibility under the rule, so some day programs in progressive states are changing how they operate, to ensure that people set their own schedules and don't spend all day in a facility. By 2022, all adult day programs will have had eight years to figure out any changes. And again, good programs that work to integrate people into their communities and either find employment or do other things during the day that are meaningful to them, won't have to make any changes at all.

TPGA: So why do you think some people might be opposed to the HCBS rules for adult day programs?

Bascom: I think there are a few different reasons. A lot of people are just confused, because there's so much misinformation flying around about the rule. There are also people deliberately spreading this misinformation, and they tend to have a couple different reasons.

First, there are providers who have a vested financial interest in operating miniature institutions and calling it HCBS. There are actually a lot of rules about running formal institutions—there are basic standards you have to follow, licensing regulations, all of that kind of thing. But those rules haven't really existed before in that same way for HCBS. That means a lot of these providers have been able to run mini-institutions for decades with virtually zero regulation or oversight. They aren't wild about changing. This is, bluntly, too bad.

There are also a lot of wealthy families who want to build new institutions. They don't like to call them institutions—they call them farmsteads, or intentional communities, or campuses, or villages. But these are all literally what the first institutions looked like, and they are still large settings that lump a lot of disabled people together and segregate us from the broader community. It's a fresh coat of paint on a bad idea. But these families want to build them, and they've invested a lot of money in their construction, and now they're worried that Medicaid won't pay for services in these settings. So they oppose the rule.

There are also people who are worried that their family member can't live in the community. We know that community living is actually possible and beneficial for everyone, even for people with the most significant disabilities, but I think some families are afraid to take the plunge, especially if they haven't seen a lot of successful examples of people like their family member living good lives in the community. These families aren't helped by misinformation—they need concrete examples of how this works, like those in parent/professional Dr. Clarissa Kripke's article on successful community living for people with developmental disabilities.

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What Makes Institutions Bad

Mel Baggs
ballastexistenz.wordpress.com

Buffalo State Hospital, closed in 1974. Photo © Shannon O'Toole
[image: A dilapidated interior hallway of a former state hospital.]

Most people don’t have the foggiest clue what’s bad about institutions. What’s bad is something you pretty much never hear about, which is the violence it does to people’s insides at a very deep level. And that can’t be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top.

Please, please, please everyone who talks about this in the past tense—STOP. This is still going on. Everywhere.

I think too many people get the wrong kind of idea. They will think that this is over. It’s not.

They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.

And those things are not real.

And those things—the belief in those things—are hurting and killing people still.

People don’t understand what’s behind the worst institutions I can possibly imagine. They think I’m kidding when I say it. Understand that I’m saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn’t have to live in them.

The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house—and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.

All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can’t see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.

But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything—everything—that entails.

Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it’s long after the fact. If you confront them on it they’ll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.

Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception—a beautiful facade over a terrible reality. I make it part of my life’s work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.

The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it’s utterly horrifying. Most people don’t know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.

You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there’s no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it’s nowhere. But you’re in agony. Whenever you think nobody’s looking, you cry, sometimes it feels like you’ll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.

Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn’t get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant—even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.

I literally have nightmares about that type of institution. When I’m wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I’ve just experienced.

This past summer I attended a recreation program for DD (developmentally disabled) people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn’t good enough for them.

One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there—she said she goes in a grown woman and comes out acting like a young child. And not in a way that’s just her self-expression—this is one of those places that molds you into that form.

To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage—what it is, what it means, where it comes from—you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

I still can’t tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that’s not the same as the amount of time I was in institutions. I call what I got when I got out, “community institutionalization.” That’s where you live with your parents but you spend most of the day being driven between various places—segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There’s not so much difference between that and being driven.

The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was “free.” I never noticed. That’s how they wanted it. I simply created the institutional walls around me wherever I went. That’s why I put “free” in quotes. If I had been someone else, I would have been free. Because I was me—because of my particular history—I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn’t think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.

I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of “normal life” that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.

I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I’ve gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.

I’m not even saying I can’t be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren’t destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.

The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.

And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.

----

(I wrote this in response to a Dave Hingsburger post. Andrea Shettle asked me to post it.)

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You Are Not Your Child

Sara Luterman
www.NosMag.org

Sara Luterman
[image: Headshot of a smiling white
person with short dark hair & glasses.]

Recently, Amy Lutz, a parent advocate, wrote an opinion piece for Spectrum News titled, Adults with disabilities deserve the right to choose where to live. I wholehearted agree with that sentiment. Unfortunately, the article that follows argues nothing of the kind. It is, in fact, an argument to return people with developmental and intellectual disabilities to institutions. These new institutions have organic-biodynamic farms, swimming pools, and fluffy pillows. They are, however, still secluded and subject to all of the abuses of Willowbrook and Pennhurst.

Amy Lutz and others who mask new institutions as a “choice” do not draw a healthy or appropriate distinction between themselves and their own children. When they say, “adults with disabilities deserve the right to choose,” they mean is that their opinions are their children’s opinions. They do not believe that their children are capable of having opinions about any serious or real issues. They see their children as extensions of themselves, rather than distinct human beings.

This is a struggle many parents face, whether their children are disabled or not. It can be hard to let go. It can be hard to not see your children as extensions of your own hopes, dreams, and aspirations. Unfortunately, for disabled people, it is much easier to justify erasing the healthy line between parent and child, because we are vulnerable. When someone has difficulty communicating, it is much harder to establish healthy boundaries.

If you are a parent of an autistic child and you are reading this, I confess, I am not like your child. While I may have more similarities and shared struggles than you might expect, I do subscribe to Dr. Stephen Shore’s adage: “If you’ve met one person with autism, you’ve met one person with autism.” However, it is even more important to point out that you are not your child. It is one thing to advocate for your child when he or she is unable to advocate, and entirely another when you essentially claim that your opinion is your child’s opinion. It is incredibly disingenuous to claim “adults with disabilities deserve the right to choose where to live,” when actually, what you mean is that you would like to choose for your child to live in an institution, and for Medicaid to pay for it.

People with developmental and intellectual disabilities need help doing things many others can do on their own. Our autonomy is largely at the whims of our parents, teachers, and support staff. This is especially true for people with higher support needs. What that means is that parents, teachers, support staff, and others have a responsibility to work harder to figure out what a developmentally or intellectually disabled person’s opinion actually is. This means creating educational materials to help people make choices. It means some amount of prompting and guidance. Susan Senator’s handmade guide to help her son vote comes readily to mind. The Autistic Self Advocacy Network has been putting out a fabulous series of image-supported, easy-read policy guides on topics ranging from Medicaid to supported decision making and alternatives to guardianship.

My own opposition to institutions is not based in some philosophical ideal about the definition of freedom. Rather, it is because I know older adults who survived institutions. Many parents will rush to point out that I do not have an intellectual disability and do not need very much support to live independently. This is true. I formed my opinion on this topic by listening to people who do have intellectual disabilities and do need significant supports and by learning from them.  People like my colleagues Liz Weintraub or Evan Nodvin and the activists at Self-Advocates Becoming Empowered (SABE) have fought for the right to live normal lives, or at least lives that are as normal as possible, for decades. Listen to them. Listen to your child. Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy. You are not your child.

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