I'm The Parent of a "Severe" Autistic Teen. I Oppose the National Council on Severe Autism.

Shannon Des Roches Rosa
squidalicious.com

Leo making me make fart noises, because that is never not funny to him.
[image: Photo of the author's teen son squeezing her cheeks so she will make
a raspberry sound with her mouth. Both are wearing hats, outdoors.]

Last week my son Leo and I had a pleasant arm-in-arm walk around a fancy shopping center while his sibling was at an appointment. We strolled past the coin collector’s shop and the jodhpurs boutique, then popped into the housewares store—just in case they had any unintentionally awesome fidget toys (which, being gadget central, of course they did).

Finding delight in utilitarian objects is part of what being autistic means for my son. Another part is being a traveling one-person party. I go with his flow, as long as he's not being disruptive. So as we wound our way past the store's racks of remarkably specialized cooking items, and just as I was getting worried about the audibility of Leo's new-fidget-propelled joy, one of the cashiers called out, "Hey guys, how are you doing?"

His tone that made it clear to us as well as to any shoppers in earshot that he was glad we were there, and also that he was on deck if we needed him. I exhaled. When we checked out, he addressed Leo cheerfully and directly but did not demand a response, and in general made us feel respected, comfortable, and welcome.

That cashier's attitude? It is what I want most from society, for Leo: Other people accepting my son on his terms, and letting him know he's considered part of the community. I wish such attitudes were more common, so that I could feel less anxious about Leo's safety and well-being as he moves through the world now, and also in his future without me and his father by his side.

But this accepting attitude is not reality for most autistic people, whether or not they share Leo's intensive needs. Leo and his autistic community members tend to encounter disinterest, misunderstanding, or outright hostility from society—sometimes even within their own families. This negativity takes root because mainstream messages and resources about autism tend to center on autistic people as strange and pitiful and burdensome and in need of fixing or curing, rather than on understanding autistic experiences and communication.

Unfortunately, most people and parents don't know how to find their way past this bad autism information. The result is too many autistic kids spending their lives misunderstood and mistreated, and as a result acting out in frustration. Their behavior is then perceived as non-compliance, and the kids get punished for "misbehaving." And then the parents publicly complain about the kids, focusing on how awful autism is for the parents rather than on the tragedy of autistic kids' needs being overlooked. It's an avoidable cycle of misery for the children and parents alike.

Still, I can't blame parents in my position for being pissed off in general, because our kids' and families' rights, supports, and services needs are rarely sufficiently addressed: We all feel disenfranchised, because we all are disenfranchised. But this sorry state of things is also why, as non-disabled parent, I look to developmental disability organizations like The Autistic Self Advocacy Network, ADAPT, and The Arc for their insider experience and knowledge about how to address that disenfranchisement. I am grateful to these organizations for how long and hard they have been fighting for rights and services for people of all ages and abilities, and in ways that we parents need to recognize, respect, and get behind.

And this is why I am so dismayed by parent-run organizations that actively oppose autistic self-advocacy leadership on autism issues. The latest example is the self-proclaimed National Council on Severe Autism (NCSA), which is not only out of step with the positions of nearly every other rights- and services-oriented developmental disability organization, but promotes a cluster of fallacies: that severe (i.e., high support) autism is being ignored; that autistic children suffer from autism rather than from having their autistic needs misunderstood or penalized, or having been subjected to traumatizing normalization therapies; that segregated housing is in autistic people's best interests and should be allotted Medicaid funds earmarked for community-based housing; that eugenics is sometimes okay and so are restraints and seclusion; that autism is an epidemic, and that autistic self-advocacy efforts are only for quirky people who aren't actually like their "severe" kids—whom they want to cure, never mind that people with intellectual and developmental disabilities helped found the disability rights movement.

To further the embarrassment for any newly-formed autism organization, NCSA contains exactly zero autistic board members—even though autistic parents with high-support autistic kids are not hard to find. In an era increasingly focused on representation and inclusion, this blatant exclusion takes a walloping amount of arrogance—and possibly a cynical awareness of society's patronizing assumption that anyone who advocates for disabled people must be a good person.

Why do these non-autistic parents feel the need to draw up their own organization? As Emily Willingham notes,

Some parents w super deep pockets want to draw lines btw Them & Us. They want their own clubhouse where they do whatever they want&their $$ buys them that. The "national council on severe #autism" is the churlish, petty rich parent's equivalent of taking their bat and going home.

— EJ Willingham (@ejwillingham) January 14, 2019

And what does NCSA even mean by "severe autism"? Well, they claim:

"Individuals in this category are often nonverbal or have a limited use of language, have intellectual impairment, and in a subset, exhibit challenging behaviors such as aggression, self-injury, and/or property destruction that interferes with safety and well-being."

But as Sara Luterman writes on Patreon (paywalled)

"Notably, whose well-being isn't mentioned. So are people with "severe autism" nonspeaking? Do they have intellectual disabilities? Maybe! But it could also be literally anybody, because it's left so open ended."

So, to the fallacies. NCSA parents claim that "severe autism" is being overlooked. This isn't true. Media coverage focuses on "severe" autism a lot, often in tell-all stories that compound stigma against high-support people like my son. A recent example is NPR's story about the impending FDA ban on electric shocking devices to control autistic behaviors. To my and others' dismay, NPR Twitter characterized the devices as a last resort for "severe" autistic people who "misbehave," instead of centering autistic survivors' and advocates' perspectives. Contrary to NCSA's claim, the real problem is not that we're ignoring high-support autistic people. The problem is that they are too often objectified and dehumanized.

NCSA also claims to "speak for those who can't speak for themselves." This is absurd, because everyone communicates; the problem is that not all parents and caregivers have been taught, or are willing to recognize, the ways in which autistic people communicate. And by making such a claim, NCSA is rejecting the reality that no one is too disabled for self-advocacy. This has not escaped the notice of autistic advocates with intellectual and developmental disabilities (IDD), like Ivanova Smith (who, remember, represent "severe autism" by NCSA's definition). In response to an NCSA board member promoting the new organization, Smith wrote:

This is not good. They trying divide the autistic community. I was non verbal. I didn’t like being institutionalized and treated badly. You don’t speak for IDD people if you want us imprisoned!!!! https://t.co/J5SLjr9Bm1

— ivan (@lauralovesian1) January 15, 2019

I am as angry as Smith is about NCSA's approach to the issues like institutionalization and housing: we are in a housing availability crisis for IDD people, yet NCSA's energies are focused on getting Medicaid to pay for segregated housing, instead of the community-based options disabled people themselves want and have fought to make possible.

What NCSA wants, specifically, is to create boutique “small-i institutions” to cocoon their own kids, even though we know from self-advocate histories that even fancy institutions are still soul-sapping, and differ very little in practice from the institutional hellholes parents think they will be avoiding. Also, by trying to tap into Medicaid funds for their boutique homes, NCSA is screwing over people who have the same support needs as NCSA parents' kids, but do not have wealthy parents trying to game the system.

If they want to do the right thing on housing, NCSA should look to another relatively new parent-led org, Little Lobbyists, whose mission is “Advocating for Kids With Complex Medical Needs and Disabilities,” and who work alongside disability and self advocacy organizations on long term housing and supports. At a recent Disability Integration Act, Little Lobbyists tweeted:

"We recognize that our disabled children will grow up to be disabled adults and as we do every day as their parents and caregivers, we want to make sure that they have the support in place to live their best lives, maximizing their independence in their home and community, and not in institutions far, far away." 

There are many other examples of NCSA's approach being counter to that of most organizations championing rights for people with IDD. This includes their horrifying callousness in posting a position statement refusing to ban seclusion and restraint one month after 13-year-old autistic California student Max Benson died while restrained. NCSA also endorses putting their adult autistic offspring under legal conservatorship, while opposing the supported decision making options that IDD orgs have been behind for years. (Even the American Bar Association recently endorsed supported decision making.)

Another tactic NCSA uses is publishing harrowing, parent-perspective accounts of autistic kids and adults having meltdowns, self-injury, or aggression. I can guarantee that I've never read a single such "real autism expose"—not one—that hadn't also happened to parents, self-advocates, and professionals I know, and who chose to help their loved one or client instead of focusing on how hard the experience was for them. The difference, besides respecting another human being's privacy and dignity, is approaching an autistic person in distress from a perspective of "what is wrong" and "how can I help them?" and also from understanding how things non-autistic people don't think twice about can be really frustrating or intolerable for some autistic people, like transitions, lights, and scents. It is disheartening to see parents being encouraged to take the approach that "this is the fault of autism which is a burden on me and all I can do is support an organization that says they have answers."

In contrast to the NCSA, autistic self-advocates don't claim to be able to "fix" anyone or everything. What they do want is to ensure that everyone who needs accommodations for their brains gets those accommodation from day one. Self-advocates want these basic rights with the full understanding that some autistic people will still sometimes be self-injurious, or remain non-speaking, even with the most understanding parents and all of the accommodations possible. And even when things are hard for everyone.

Parenting is never going to be a pony party, no matter how easygoing kids are. But the baseline is that, whether our kids have intensive support needs or not, we parents need to be on our kids' sides. Plus we know, too well, what happens when the negativity and parent-burden mentality of organizations like NCSA are not countered: we will continue to see filicides of "severe" autistic and disabled people. As disabled advocate Ruti Regan notes,

There are hundreds of disabled people murdered by relatives who should be alive. And all too often, the media treats these murderers as victims rather than perpetrators, and frames murder as an understandable reaction to the difficulty of caring for a disabled child.

— Rabbi Ruti Regan 🏳️‍🌈♀🇺🇸 (@RutiRegan) January 24, 2019

Can you imagine how much more productive the NCSA parents could be, with their considerable energies, executive function skills, and resources, if they chose to to work against those negative parent narratives instead of promoting them? If they chose to work with self-advocates instead of opposing them? If they would acknowledge disability advocacy history, including the awful things that happen to people with disabilities when non-disabled people dominated disability conversations? If, instead of cherrypicking statistics to misrepresent the autistic people who have always been here as a tsunami epidemic that will overwhelm parents and families and governments, they aligned with disability advocates on policy and research, so that all autistic people, no matter their age or ability, could have a better quality of life?

Until the NCSA and their ilk wise up about what their priorities should be, their kids are the ones who will suffer. The rest of us will look to autistic self-advocates for direction, and fight for change and hope after the model of autistic self-advocate Sam Crane:

"We're a community that wants hope, and want support. So our first advocacy campaign back when we were entirely volunteer led tiny oganization in 2006, was against an awareness campaign that portrayed autism as the sort of dark force that was holding children for ransom. And that was sending messages like, you know, we have your child and your child will never have friends and is doomed to a life of social isolation and will never live independently. Those are messages that autistic people often do hear about their future, and we found that it really negatively affects us. We are people like everyone else. We want to believe that we have hope in our lives." 

And Leo and I will continue our excursions, always looking for fidgets and fun, as well as more places and people that make us hopeful about his future in our community.

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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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