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.