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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Autism: What ERs and Hospitals Need To Know

Photo © ILO | Flickr/Creative Commons
[image: Doctor giving a heart exam to a patient on a
hospital bed. Both people are East Asian.]

I am a professional disability advocate in my mid-thirties. I am also autistic and have various learning disabilities/mental health diagnoses. I have always been very lucky in that I live in a state that gives me good access to healthcare, despite the fact that I am very low income.

I was a personal care aide for many years, and due to this I developed back problems. In the spring of 2016, they became significantly worse. I tried many, many therapies and medications. I was eventually diagnosed with an extruded disc, and had surgery in January, 2017.

Although my surgery was supposed to be routine, and all of my health care practitioners knew in advance about my unique neurology, it quickly turned into a bad situation: I reacted very violently to the anesthesia, then had an allergic reaction to the opioid painkillers (which did not work otherwise). I ended up having two ambulance rides, two emergency room (ER) visits, and an overnight hospital stay over the course of 72 hours. None of this was pleasant—I would even say it was hellish at the time—but I also ran a 103 fever for unknown reasons, and so spent part of the experience hallucinating.

Why Hospitals And ERs Need Better Guidelines For Treating Autistic Patients

I would like to make clear that I am very grateful for the care that I received at the hospital, and I understand that the doctors and medical personnel were acting in my best interest while also running a busy city ER. However, as an advocate, I would also like to ensure that what happened to me never happens to another autistic person.

The majority of online materials I have been able to find on healthcare and ER visits by autistic people assumes that 1) The autistic person is a mental health crisis and 2) that they are not their own guardians. These materials are also rarely written by actually autistic people. We need better materials.

I am therefore writing these guidelines so that when my neurodivergent friends and I break our ankles, wrench our backs, cut the ends of our fingers off, or have an asthma attack or a seizure, we can know that we are being seen by people who are making a sincere effort to understand how our unique neurology affects our ER and hospital experiences.

Introduction

Autism is a neurodevelopmental condition which often bring communication difficulties, sensory processing problems, and executive functioning deficits. In addition, even the most intelligent, talkative autistic person may lose their ability to speak or communicate clearly when they are in distress.

Autistic people come to the ER for the same reasons as any other patients—they are sick, and they need immediate assistance. But because ERs are strange, confusing, often hellish places, autistic people of all abilities may behave unpredictably and even violently when brought to the ER. Autistic people who have more intense communication support needs, especially, may not be informed why they are there, nor what is going to happen to them, and may therefore get restrained for routine procedures.

It is likely that higher-support autistic people will come to the ER with family or staff members, especially if they are not their own guardians or medical decision-makers. Be sure to talk with caregivers about preferred communication strategies, so the autistic patient can cooperate with the medical care they need, to the best of their abilities.

Establishing reliable communication is important, since just because it seems that an autistic person may not seem to understand something does not mean they do not. Never assume anything about an autistic person's behavior, except that they are doing the best they can in circumstances beyond their control. Some autistic people may be unable to stop their bodies from behaving in violent, unpredictable ways, even though their minds are telling them to stop. Some people who use communication devices may lose their ability to do so in a crisis because their bodies are so overwhelmed.

Communicating with Autistic People in ERs or Hospitals

Three Autism-Specific Communication Terms to Know:

1. Echolalia is when someone echoes something they, you, or someone else has said.  
2. Stimming is strong emotions or other feelings or urges resulting in physically repetitive movements, often for happy, coping, or self-soothing reasons. 
3. Scripting is when a person repeats or quotes from a source such as a television show, to express themselves when they cannot access the words they need, or for pre-prepared responses.

Best Practices for Communicating With Autistic Patients: 

• Speak directly to the autistic person, even if they have a helper or family member with them.
• Do not ask, ‘How are you?’ This is an absurd question, because if someone is in the hospital it is because they are not well. Instead, ask concrete questions, such as, ‘What hurts?’ or ‘Why did you come to the ER instead of waiting for your PCP/the clinic to open?’ or ‘Are you having trouble breathing?’ or ‘Do you feel like you are going to throw up?’
• Speak slowly, in clear sentences, and give the person plenty of time to respond.
• Do not expect eye contact. It is both unnecessary, and uncomfortable-to-impossible for many autistic people.
• Exude calmness. Autistic people can and will pick up—and echo back to you—your bad mood or anxiety. Even if you’re a busy ER doctor at a city hospital, try to reassure your autistic patient that it is good that they came in.
• Do not expect autistic patients to understand the smiley-face-sad-face pain chart. (That chart makes no sense to many of us). Instead, make it an option to ask about pain on a numbered scale.
• Ask questions multiple times, in multiple ways. Often autistic people will simply echo what is most recently said. If you ask, ‘Does your ear or your throat hurt?’ they may reply, ‘Your throat hurt,’ when what they meant to say is that their nose hurts. Similarly, if you say, ‘is this happening, yes or no’ they might say ‘or no’ because finding words to communicate with is hard and it’s much easier to just echo what was said.
• Try not to use metaphors when talking. Be very literal, and expect the autistic person to be equally literal. (Plenty of autistic people of all abilities are sarcastic and witty, with a dark sense of humor; this is just not likely to show up in a place like the ER because they are under so much stress.)
• Don’t use dolls or other apparatus. Most autistic people know perfectly well that the doll is not in pain, and may wonder why you are asking them to point to where it hurts on the doll. The doll is plastic. Who are you to work in a hospital, if you think a doll can feel pain?
• Autistic people can have a very low tolerance for absurdity. I honestly thought that the nurses were forgetful or inept when they kept asking me my name and birthday. Wasn’t it right there on the chart? Explain why you need to check.
• Explain exactly what you are doing before you do it, and why, and what sensations they might experience.
• Pronouns can easily be lost in a crisis. If the autistic person is speaking in the third person or referring to themselves as "you," simply try to adjust and follow their language accordingly, or look to any caregivers for support.
• If you touch a body part, then ask ‘does this hurt when I touch it,’ autistic people may say no, since you stopped touching that part. It doesn’t hurt them at all when you touch the air! Instead, place your hand, preferably firmly, and ask, ‘does this hurt now?’
• Do not discourage stimming as a coping mechanism, unless your autistic patient is physically hurting themselves or others
• If a person is scripting, ask their caregiver to try and figure out where the script is coming from and what it means. For example, they might be quoting a favorite character who is in a lot of pain to indicate that they themselves are in pain, or echoing a character who is fed up with things to say that they are fed up and want to go home.
• Offer a whiteboard or notebook/pen to communicate more easily, as an option (this will not work for everyone).
• If you have time, and the person is not in extreme distress, ask the autistic person what they are passionate about. This is an straightforward way to help your autistic patient be more at ease with you. Show as much enthusiasm for the topic as you can genuinely muster: If you do not like trains, there is something wrong with you, (sarcasm), so just like trains already.

A Final Reminder

If an autistic person is biting themselves, hitting themselves, or engaging in other self-injurious behavior, it means one thing: they are in distress. As lashing out at others is not acceptable, autistic people often turn their behaviors inward and hurt themselves. Your immediate job, above all else, is to do your best to relieve that distress.

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A version of these guidelines was shared with the ER that treated the author. While thankfully the author has not had to visit the ER since, they are glad they did make a small difference in this small way.

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