Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Bending the Arc of Disability History Toward Rights, Freedom, Social Justice, and Belonging

Presented by Allan Bergman

Section 8. Integration and Living in the Community

Allan Bergman begins this Section by describing the primary purpose of the Administration for Community Living, "People with disabilities have the right to live in a home of their choosing, with people whom they care about, that is integrated into a community that values their participation and contributions." He identifies the states without large state institutional settings and reviews the principles of supported living and the size of settings. Mr. Bergman then explains disparities that still exist in housing policies including economic and policy barriers. He urges the viewer to read and understand the Final Rules, adopted by the Centers for Medicare & Medicaid Services (CMS), that are now in effect for home and community-based waiver services, and include the requirements for person centered planning.

Okay, now let us shift from education and employment, and post-secondary education to the world of community living, neighborhoods, houses, apartments, condos, neighbors, all that fun stuff.

And a little over 10 years ago, Secretary of Health and Human Services, Kathleen Sebelius created within the Department of Health and Human Services what today is called the Administration for Community Living. It has grown and it includes today the Administration on Disabilities which includes the Developmental Disabilities Act, the Independent Living Centers, pardon me, the National Institute of Disability Living Rehabilitation Research, and the Administration on Aging all brought together because of some common issues which she laid out here, a single agency charged with developing policies and improving supports for seniors and people with disabilities, because she realized if we look at the numbers, how often do we begin segregating seniors, whether it's nursing homes or retirement communities, or assisted living. Not to saying those places don't have a role sometimes for some people, but they seem to be the easy exit strategy and it was all based on the Americans with Disabilities Act, which is wonderful.

So we have a federal agency created to implement in community living the ADA, right. And here's the vision that she described. "All Americans" all, notice she didn't say all but 5%, or all but this, or all but that have "the right to live in a home of their choosing with people with whom they care about, that is integrated into a community that values their participation and contributions." That is an elegant statement of mission, of principle, of values, call it whatever you're comfortable with, but think about your own situation within your financial capabilities, don't you choose where you live? Yeah, I can't afford the mansion, so I have to settle for this, but I'm gonna still pick the neighborhood within the budget that I have, or the apartment with the budget that I have. We'll come back to housing costs in a little bit.

But I choose who I live with, I choose my roommate, my housemate, my partner, my spouse. And think about this as we look at the typical group home where people should be grateful if they get a vacant bed in that six, or four person or eight-person place. And you get to move in with people you don't know and they don't know you, and you wanna know why people don't get along and have good relationships. You wanna know why there are behavior issues, and of course, what do we do? We bring in the behavior management person to tell you, you will be compliant. You need to understand that you have to get along with these people, you have to follow our rules. I set the rules in my house, my wife sets the rules in our house, okay, not some provider.

And I've been one, I understand it, I understand the regulations, but what we've gotta understand is choice and control and preferences really make the difference, and we'll see in a little bit what the research tells us. It's not just ideology, so again, ACL, people with disabilities and older adults should be able to live where they choose and fully participate in the community with people they choose, so everyone can contribute throughout their lives to their neighborhood, their community, and their home, nothing wrong with that.

So where are we in this process of, hmm the deinstitutionalization that got started a while ago as you can see we are now at 15 states plus the District of Columbia thanks to data gathered by the State of the States and the Institute on Community Integration at the University of Minnesota, tracking this information as states provided.

So we're moving along, but we haven't seen a lot of closures in the last six years. But thank you again to the current data from Dr. Amy Hewitt at the University of Minnesota, look at that drastic change that we have had.

We peaked at 154,000 plus in 1997, we are now down to 15,511, so we've cut it by 90%. And you can see there are a number of states that have very few people left. One to 99 (10 states), 100 to 299 (10 states), 300 to 850 (8 states), and the list keeps going because you'll find at the bottom of the list, unfortunately, and look at this sad statistic, four states with over a thousand people, and those four states have 43% of all the people in state institutions in the United States—that's a travesty.

Where is the advocacy in those states that 6,472 people, as of a year ago, were still in state institutionally operated facilities segregated from the community? And we know they don't have to be there 'cause there was nothing magic that went on in the 15 other states and the District of Columbia except building capacity, building infrastructure, and training.

So we moved then, if you'll recall, we talked about the community-supported living arrangements, amendments to Medicaid in 1990. That work was originally done by Dr. John O'Brien, one of the leaders in this field of best practice, work done in California, some of the early work even in Nebraska and other states. But then, this was written in 1990, not by Dr. O'Brien, but as I will show you in a minute by Gary Smith and promoted as part of the amendments, again by the National Association of State Directors of Developmental Disability Services.

And I wanna spend a couple of minutes on this to really explain what is and what is not supported living because it gets misclassified all over this country. It's only for people who don't have a lot of support need, baloney that's not what it is, okay? People should be supported in living arrangements typical of those in which persons without disabilities reside. So most of us live with two or three, maybe four other people. Most of us don't live unless we have a very large family with seven or eight or 10 or 12 other people, and certainly not people we don't know, okay?

So typical house, typical apartment, typical condo, whatever, single family, duplex, whatever it is in your community, all right. And the service that you receive change as your needs change without the person having to move. Think about what we often do in state systems. Well, we have this kind of a group home for people who need this level, but if you get older, maybe we'll move you to a group home for seniors. Oh, and we'll disrupt all the relationships even there.

And think about this for those of us who are maturing into seniorhood or what is now being referred to as elderhood, seems to be the new word. Yeah, some of us might need a home health aid, we might need personal assistance, do we have to move to get it? Does my house have to be licensed for somebody to come in to do that? No. Why do we impose that on people with disabilities? Those are supports and services that people as they age may need, or younger people may need depending on their physical status or their health status. You shouldn't have to move to a place to get a particular kind of service other than a hospital for real medical services that yeah, you're gonna have surgery, you want to go to a good hospital and make sure they know what they're doing.

Choice over where and with whom you live, that's critical to picking your housemates. People you like, you get along with, you have common interests with, doesn't mean you agree on everything.

I haven't yet met a couple that don't disagree about some things or two people living together. Yeah, that's part of life, but generally there's harmony because you like one another, you have some similar interests, so we need to be building on that.

Control over the living arrangements. I'll pick out the furniture that I like, I'll pick out the colors that I like, I don't care whether you like them. I worked with a family recently where a young man, fortunately, moved to his own apartment. His mom, who tends to be very oversight if you will, said he's gonna move and we're gonna go take him shopping. And I said, do me a favor, Barb, let him pick out the furniture that he likes. This is going to be Andy's home, it's not your home. And I don't care whether you like it or not because it's his, and if he likes it, he's gonna be comfortable.

And she said, really? And I said, yeah. And he picked out the stuff he liked and she hates it, but he loves it and he's comfortable with it. And it wasn't a game, he has his choice and he's entitled. He picked out like a dark green couch and matching chair. It looks very nice, but it's not her color scheme, it's not her house. If it were her home, fine, it's his, that's the control over your living. What kind of sheets, what kind of blanket, what kind of draperies, any of that stuff, we pick and choose what we like, why shouldn't people with disabilities have the same opportunity?

And the supports are critical to help build relationships in the community. Again, it's not a place where you spend 24 hours a day, and we know now with better training of direct support professionals, a good portion of their job is helping people get introduced and into the community to have relationships, all right. And again, tailored to the needs and preferences of that individual, all right.

And services and supports are more effective, obviously, where it's the person living in the context of day-to-day. If you don't have a washing machine in your house, you're gonna go to the neighborhood laundromat and you're gonna learn how to use the laundromat. And you have to put coins in 'cause not every house does have a washer and dryer, more and more so today, well then that's something you gotta learn how to do. Okay, fine, put it in your plan, okay.

And they've gotta be flexible based on the individual, again not based on a label, it's not a program. And I love the last point here from Gary. People with developmental disabilities should not be excluded from supported living arrangements based on the nature and severity of their disabilities because again, that has been a perception. Oh, this works for people who are easy. No, this works for people who are anybody as long as you know how to do the supports.

And I'll give a plug to one of the earliest agencies that did this in the Madison, Wisconsin area before it was even technically legal under Medicaid, and it's called Options in Community Living. They're still there, founded by a woman named Gail Jacob, and they've got stories that will blow you away of people who came straight out of institutions with really complex issues and initially had 24-hour support, some had two-on-one support. Some of those people are now in community college. Some have started their own businesses because they got to be seen as a real person, not a number, not a label, and diagnosis. So thank you, Gary and NSDDS, for that.

And again, it's not just small residents, it's not an apartment program, okay? It's not unsupervised, it's not a residential alternative, it's a home. It's not home-like, it's a real, real home, and that's where we need to be moving, and we are moving in that direction, and that's a good thing. Also from the research to back it up now, it's not just ideology, okay? 50 years, outcomes are best correlated when the person has control where and with whom they live, where the person works and how they earn money. What a novel idea has a lot to do with where I live and where my friends live and my family live. What do you do during the day? Nothing. Oh no, well, I volunteer, I'm doing an internship. I go to this club, I go to this library, okay.

And the relationships that you develop with what we call today "natural supports" (I don't like that word, but it's the alternative to paid support), but I would call it friends, colleagues, relationships, networking, but I understand we have to use that word.

And then look at this wonderful graph, and I'll break it out into a chart in a minute of the number of people living in a home with three or fewer people as of a year ago on the state DD data set, okay.

30 states, over half the people who are living outside of their family home in the community are living at a setting of three or fewer, and you can see we've got about seven states where it's at 90% or more.

Now, to be clear, some of these are not supported living in that sense, their host homes, which is like a foster care, but the research on that is increasingly showing that's very family-oriented and people choose somebody to live with, and the person gets to say whether I think I can live with this family or not, and that's an acceptable option for some people.

So that's another way to look at this, but size is really important as the research shows.

So now you can see, rather than trying to read that graph, I broke it out, and what I did is I asked the states that have no institutions to show you that there is some relationship, not 100%, between the states that have closed their institutions and have developed more and more small community living supported living homes of choice for people.

And I'm not gonna read the list, but you can see the numbers are pretty big. And then we get down to the 60 to 70% group, and again, most of those folks have no institutions. Then we start moving a bit in the other direction to 40 to 53%, and the numbers are there... 50 and over, we're still in pretty good shape, but we start getting below 50, and there are some states that are on the cusp, and it may have come up in the last year. And then we get to the, I'll call it the losers, not the winners, the states that have the fewest settings for three or fewer, and what a surprise, most of those, not all of them, are the states that have the largest institutional populations.

So there is some relationship between closing institutions, building capacity for everybody in the community, regardless of intensity of support need, and we need to look at this from other people and say, how did they do it? It's not magic, they spent time.

And I always say to the states that are further behind, go talk to your colleagues in the other states. Learn from their practice, learn from their mistakes, you'll make your own, but let's move the ball forward, it can be done.

Now what's interesting on the three or fewer is in 2005, and I don't know whether they looked at some of this research or not, when Congress passed what was called Money Follows the Person as part of the Deficit Reduction Act, and it's now been renewed a couple of times, this was to put money on the table. Remember I've talked about money and incentives to states to say we're gonna give you extra enhanced federal Medicaid matching to move people from nursing homes, to move people from Intermediate Care Facilities and those kinds of places into community living, and we'll even pay for some of the transition costs, moving, down payment, some basic furniture to help set up a house that was unheard of in Medicaid funding, but this was the Fed's beginning to see outcomes are better in the community and cost is cheaper. It's a win-win. Sorry, it works, okay? And the whole purpose was to decrease the use of institutional services, okay?

So it gave people real choice under that pre-admission screening to be able to say, we've now got money to help you move to the community, is there somebody you'd like to move with? Whatever it is, okay, fine, let's work on that. And it gave that more flexibility to the states, all right.

And fortunately, there were good procedures that were put in place for continuous quality improvement, it had to be in the state's plan for this.

And in 2022, 34 states and DC had done this work, and the research has been done by a group called Mathematica and here are the states as of May of 2022, so you can see if your state is or is not here. And it may have come in since 'cause there's been some new funding, but basically the funding for this documented by a group called Mathematic, every person who moved had better quality of life outcomes than in the facility and significantly, statistically, whatever that means and the researchers know what that is. And in addition, significantly reduced ongoing long-term support costs.

So it's documented in research, it's not just theory, it's real, and it happened, all right.

But then look at what they did in the legislation of what is a "qualified residence". And they must have been looking at some of the research from the University of Minnesota. The home had to be owned or leased by the individual. Oh my goodness gracious, not a provider, an apartment with an individual lease. Lockable access and egress, some of this now has shown up in some of the new Medicaid rules for Home and Community Based Services. And look at this, they specify to the states, if you want this money, nothing bigger than four unrelated people. If we were gonna redo this again, I'd say fine, just amend it and make it three unrelated people. But that's in law, yet under the regular waiver, we are still allowing states to do six and eight person group homes under the Home and Community Based Services. So we've gotta get them together here and get it straightened out.

So it will come together, and this summer at the National Association of State, DD Director Services Annual Conference, the Administration on Community living, remember committed to all of this good stuff did a major presentation on housing and where we are, and most of these slides are from that session, so thank you ACL.

But again, common sense, housing, not group homes, housing creates access to the community and what it has to offer, shopping, recreation, entertainment, employment, social stuff, whatever you want to do and a sense of belonging, we talked about that earlier. You're connected to your neighbors, your street, your block, your neighborhood, whatever it is, how your community is organized, and it allows people to participate and believe in something larger than themselves called community.

And again, this is consistent with the beginning of ACL. Adults with IDD have the same right as others to live independently, remember community of the dwelling of their choosing, independence, choice and control, not without support, not on their own, none of us are doing that anyhow. And again, whether it's a home, apartment or other kind of community living, control where and with whom they live. Hmm, sounds like they copied from Gary Smith's stuff from 1990, but that's great. Opportunities to rent or buy. Oh my God, people with disabilities can buy a home. Oh yeah, remember Fair Housing Act, you can't deny somebody based on disability if they meet the income criteria and SSI, SSDI and wages count no different as income than anything else, all right. They're protected under the Fair Housing Act and the ADA.

So here's kind of the situation at the moment and as you can see from the graphic, and I think this is actually from the University of Minnesota that ACL was using 'cause they fund it, that there's still an awful lot of people living at home with their families, but we are making some headway in moving people.

And notice they've decided to classify institutions as anything bigger than seven people. And that's ACL, that's not us, okay. So we're moving along about what we're defining, but here's the problem, housing is a problem, affordable housing. Home ownership, 65.4% for those of us overall. And vacancies right now as we know in the rental market are few and far between and prices have really gone up in the last several years, particularly in major metropolitan areas, but all over.

But very few individuals only 11% live in a home that they own or rent by themselves or with others. So this, again, from ACL we know that only 18 to 21% of folks from the University of Mass Boston data are competitively employed in the community. Most folks are still relying on SSI, SSDI and Medicaid, and it's compounded by the lack of affordable housing and the increased rent.

So look at these numbers, 7 million affordable rental homes which is only 35 per hundred people who need it. So we've gotta get more rental housing and more affordable housing, and these are some quotes that they put together. HUD vouchers are hard for people to understand, it takes a long time. I live in the metro Chicago area, in the city of Chicago you will wait 20 plus years to get a HUD Section 8 voucher. So when the deinstitutionalization happened, whether it was nursing homes or ICF, most people whose home were Chicago could not afford to live in Chicago. Even with some additional support, they have to live further south. They can't go back to their home community because of affordability and it's tied to median income, etc., and it doesn't really reflect enough about the low-income cost, so...

And Medicaid doesn't pay for that, you can't pay for room and board with Medicaid and only a few states they're listed here, provide any supplement to the federal SSI which in some cases does help people to make their rent payment, or make it easier to pay their rent.

So we got a lot of work to do, and homelessness is a priority, but people leaving institutions is not a priority in most local jurisdictions, so we've got to still look at how do we expand at the local level what we do. And the accessibility standards don't apply to older buildings, so for somebody who needs access, that's another problem that we have to solve because if it was built 50 years ago, 40 years ago, 30 years ago in most cases, you're not obligated under the ADA to make those accommodations. So as a result, lots of the older housing stock, even if it's affordable, may not be accessible. So consequently, it still discriminates.

This one is fascinating, Low Income Housing Tax Credits are exempt from Section 504. That seems to be something we need to address with Congress as a relatively easy fix. Why not make that available as an accommodation for people with disabilities? So that was identified by some of the gurus as a real problem, all right. And then there's still a lot of problems for people applying for SSI or SSDI and the ID/DD world, not getting in the system well, getting on a person who doesn't understand, and so there's more training that has to be done there as well.

But here's the good news of this presentation, there is a new partnership between the Department of Health and Human Services and the Department of Housing and Urban Development to improve access to affordable, accessible housing and critical services that make community living possible. This is a phenomenal policy shift.

Again, we've talked about before all the different departments, the different laws, interagency collaboration is something that's really only started to happen in the last 10 years. And this one is critical when you see who the players are who are working with HUD, the Center for Medicare and Medicaid Services, Substance Abuse and Mental Health Services Administration, ACL, and the Assistant Secretary for Planning and Evaluation at HHS, so we have got big players from the Department of Health and Human Services, including Medicaid and Medicare sitting at the table with Housing and Urban Development.

And as you'll see on this slide, a new Housing Services Resource Center was launched this June. This is brand new, the website is there, they're continuing to add information. This needs to be a place all of us need to be tracking regularly, get our state housing authorities to know about it, our state DD agencies, our mental health agencies, families and advocates. This is going to be in my opinion a new 21st-century treasure about how do we access housing, and we've gotta do this, but there's even confusion about what's out there today.

And these are my ads, not ACLs, but I want to be sure that what the purpose is of subsidies or rental assistance, and generally you pay 30% of your income for rent if you're getting a housing subsidy, and the housing authority pays the difference. So if somebody's getting SSI at $770, okay, they're gonna pay $330 or whatever, $230 and the rest of it, oh, there it is, I've got the example $252 per month, a little more for somebody who's blind because their SSI checks are higher, okay.

The Housing Choice Voucher, like I said, is a local public housing authority, so you have to deal with your local folks. So advocacy here needs to happen locally as well as at the state level, as well as at the federal level, all right. And those are mainstream vouchers, mainly for people aged 18 to 62. Again, I've given you the link in the website of where you can get more information on these as well.

And then there's Project Rental Assistance, better known as Section 811. And the funds here go to state housing authorities, and then they pay private owners, and they do set aside sometime 10%, 20%, they get tax credits for that. So we've got some good things going on, we just need to expand them, and there's a link for you to get information on that as well.

And here's what this new thing is all about. They're gonna be coordinating in this new collaborative approach, technical assistance. They're gonna build real partnerships federally and want them replicated at the state level. They'll role model, they're gonna share innovations on the website, and they're gonna work to leverage and align resources, so we don't have this kind of wall thing. Well, I'm sorry, I can only do this and we can only do that, how can we do this together and we do what we call braiding of the funding. They're gonna hold prize competitions starting this year for showing us nationally who's doing this kind of stuff well, and enhancing affordable, accessible housing for people with intellectual and developmental disabilities.

And the last one that I show you in this section is from the state of Maryland, which has been doing some very exciting work in this area. Missouri has, there's a couple of other states that are working on this, but I love the picture of this manual, "My Own Front Door, A Handbook for People with Disabilities on Becoming a Tenant and Staying Housed". And you can go to the Maryland Developmental Disabilities Administration website.

They have created a separate agency in that state that is teaching providers and advocates how to find affordable housing, how to negotiate leases, how to do all of that work thanks to the leadership of the Department, Bernie Simons, who is the Assistant Secretary there, past president of NASDAQ, give the shout outs when we can.

Similar work as I said in Missouri, and they're moving this very well because what they did, a very smart move, they took a gentleman who had retired named Tim Wiens, and Tim had run an agency called Jubilee in Rockville, Maryland, and he had closed all his group homes and moved everybody to supported living and did it on his own with support of the state.

And so he has now come in to run this housing agency on how to teach everybody else how to find affordable housing, how to negotiate leases, how to make the waiver system work, et cetera. And so there's gonna be more of that, and I'm sure this will get showcased by ACL as well. So there are states that are really pushing to get this done and make supported living, not the exception, but the expectation and the norm for everybody, regardless of complexity or severity of disability, all right.

And now we will proceed back to Medicaid and the Home and Community Based Waiver Services. Again, remember those started in 1981 as the alternative to institutions, hospitals, and nursing homes. In 1990, the community supported living arrangements amendment for supported living were added. Then we've done all this other work around employment, post-secondary ed.

We had the Americans with Disabilities Act, and we had the "Olmsted" Supreme Court decision in 1999 regarding the most integrated setting. All of these things reverberated inside the federal government at the Center for Medicare and Medicaid Services. They're not immune; they read the research, they read the case law, and it's really exciting because, as I've said earlier, I have tracked Medicaid since 1981. And every time when that employment piece came out in 2011, I was like, "Wow, this is cool."

What I'm gonna take you into now shows you the final component of alignment across every federal funding stream for those fundamental principles that were started in the Developmental Disabilities Act: independence, productivity, integration, interdependence, and inclusion, and building people's programs or plans, or written plans based on strengths, preferences, interests, and informed choice.

It is now the law with Medicaid, Home and Community-based Services. We've had a few delays because of the pandemic. These rules came out in 2014, that's eight plus years ago. They were supposed to be fully implemented originally in 2019, then 2021, now it's down to 2023 because of the pandemic and the work that had to be done to get there, and we'll see if we get it there by next March or April, I hope so. But this applies to all Medicaid waivers, the Community First Choice, everything that is being done with Medicaid for community services and supports, all right.

And these rules hit, and one of the problems we're gonna get into here is there are two parts. There's the so-called settings rule, and there are the rules for person-centered planning. Somehow, most organizations and some states think they're all together and they're all delayed till 2023. That is absolutely untrue and incorrect. The person-centered planning rules, which we will go through, are fully in effect and enforceable as of April of 2014. I'm sorry, yeah, 2014, 90 days after they were issued. Okay, like most rules, the others have had delayed timelines. So state plans have to be in compliance, or there's gonna be a problem.

So for the person-centered plan, key component informed choice. Hmm, we see that word several times before. And again, the points I'm trying to make here is the language now in DD Act, Special Education, Voc Rehab, and Medicaid are almost identical. We no longer can say, "Well, we do it this way, and you do it that way, and you'll have to figure it out." This is an amazing convergence and alignment of federal policy that will only help advance the outcomes for people with all types of disabilities, including people with intellectual and developmental disabilities, all right.

So you can't be doing case management, or as we prefer to call it now, service coordination, 'cause again, think about our words. I'm not a case, and I don't want to be managed. I want coordination of my services and supports. It's a more dignifying term.

So the provider of this cannot be a provider of direct services unless maybe in an outlying rural area there's no choice because of limited populations. That applies to some states, but in most cases, the people doing service coordination, be they state employees, be they county employees, be they private nonprofit contractors, have to be freestanding to do the advocacy, person-centered planning, and service coordination for the person or the group of people they're working with. And we need to remind them that is their job - to be the advocate on behalf of John Doe, or Mary Schmitz, or Jose Hernandez, or whomever it may be. That's their job, not to mitigate for the provider, not to defend the provider. Their job is advocacy, and that's why they must be separate.

So when we get to this settings rule, again I've highlighted directly from the regulations must have. So this is not optional, this is not would be nice to have, ideally we'd like to. You must have the following qualities, all right, based on the needs of the individual in their person-centered plan.

The setting is integrated, oh my goodness gracious, and supports full access to the greater communities, including, and again this is their language and priorities, seeking employment and work in a competitive integrated setting before even engaging in community life. Is Medicaid making it clear from 2011 and now here? Integrated employment is a priority for a good life in the community. It couldn't be more clear, and I didn't write any of this.

Engage in community life, control your resources, receive services in the community. Here's an operational definition of inclusion and integration to the same degree of access as individuals not receiving Medicaid Home and Community-Based Services. Full access to the community, you don't have to wear a tag, oh, I get Medicaid HCBS, will you let me in? No, no more, okay? Full access with accommodations as required by ADA or 504, okay?

The setting is selected by the individual from a bunch of choices, needs, and preferences, opportunities to make informed choices. And look at this language in number three, similar to the regulation I showed you previously in the Rehabilitation Act.

So again, we've got agencies looking at each other now for this alignment, and I have to tell you, that is wonderful on behalf of the population.

Informed choice must include opportunities to discover, explore, experience a variety of options. We can't just say, would you like this or that? Well, I don't know what that is. Well, good, let's go take a look.

And I'll share with you a story from the state of Illinois when we had a prior Director of the DD Services, name was Kevin Casey. He's now moved on, and he had come from Protection and Advocacy in Pennsylvania. And in the Governor's administration that he came to work with, they were going to close a couple of institutions. Oh my Lord, I won't get into the politics and the ugliness of it, but Director Casey was going to one of these institutions one day, and lots of people knew he was coming.

So he's parked his car and he's walking across campus to the admin building, two of the residents come up to him. They clearly had been prompted by staff, we love it here, we don't wanna leave. He said, really? And Kevin was very smart, really? What are you worried about? We have friends here, we like it here. He then said, well, has anybody taken you in? Because this was near Springfield, the state capital, to Springfield to show you some of the housing options you could have, an apartment, maybe a house out in the suburbs or whatever. No.

You two guys seem to like each other, might you wanna live together? What? I mean he played it beautifully. Yeah, good. I will come back to your staffing, which he did. And I will make sure that there is somebody from the community who will give you the opportunity to see what is out there, and if you really decide you wanna stay here, I will respect that. That's informed choice.

Guess what happened six months later? Those two guys moved into an apartment in Springfield. They got to see what it was, it was lovely. It was right away from downtown, there was shopping there. Both of those people, I think, ended up in six months getting jobs part-time and whatever. But they were clueless, and they had been set up by the staff that didn't want the institution to close because they'd lose their jobs potentially. Well, I'm sorry. Are people with disabilities chattel property in these kinds of games? No, they have full civil rights. So that's a beautiful example of informed choice.

And what this says is in the person-centered planning document, resources have to be made available to allow people who have had limited life experience to get exposed to put your toe in the water, to taste it, smell it, feel it, whatever metaphor you want to use to know if I might like it or might not like it, okay. And you can combine services. You can't just be working, or you can't just be in day services. You can have part-time work and part-time integrated day, so you get to combine stuff. Update your change and preferences at least annually. Yeah, I've learned something, I don't like this as much. I wanna try something else now, that's allowed, you're not stuck with your plan for 25 years, okay.

And there it is again, sufficient supports to make informed choice and exercise autonomy to the greatest extent possible, which also plays into supported decision making that we talked about a little bit earlier. Yeah, I need some assistance, help me sort this out. Okay, negotiate work schedules, break times, that's part of customized employment, why not? And the tasks that they do should be similar to what people without disabilities do, even if they have to be modified or accommodated.

So I've put together a list just because we don't know how to think outside our programmatic box of all the things people can do in the community. And just look at this. How about volunteering at a soup kitchen? I know a young lady, a family member who did delivery of Meals on Wheels to seniors as a volunteer. The joy on their face when they saw her at the front door and in turn, the smile on her face contributing to their nutrition, invaluable, okay.

It wasn't paid work, but she was doing a meaningful contribution in the community. A lot better than sitting in a sheltered workshop or a day program for sure, okay. Books on tape, book clubs, art classes, libraries, museums, and think of all the things in most communities. I realize in some rural communities there are fewer. Find out what they are, make sure you have a directory. Find out from people who have lived in that community a long time, what are the things people do? Where do they go to have fun? To recreate, to socialize?

All right, peer support groups, very important, and that can be in all different areas. Going shopping, what a novel idea. You can go to the grocery store, you can go to the drug store. Maybe you need support, maybe you don't. Gyms, we don't need special gyms for people with disabilities. Most of the existing YM and YWCAs, if you have one, are happy to accommodate. Most of the private fitness centers will, and in addition, some of the fitness centers have actually hired, that I'm aware of, people with disabilities to work there and do a lot of the support services, okay.

Oh my goodness, go to a barber shop, go to a beauty salon, get my nails done. As opposed to in some places, well, it's too dangerous to go in the barbershop or the beauty parlor, so we'll bring them to the group home. That's not inclusive, that's not community, that's really demeaning if we think about it. Caring for others. I mean, go down the list, pet care, dog walking, gardening, vacation, all of these things need to be thought about and put on the list for people to think about as they're doing this.

And going along with this and the community integration initiative, earlier this year, ACL sponsored a webinar summarizing the research on what we're calling Agency Without Walls, so basically all in the community done by David Hoff at ICI at UMass Boston, all right. And the whole purpose here is to design individualized supports and services to assure compliance with Title II of the ADA and the most integrated setting as defined in the Supreme Court decision.

And here's what David summarized: stronger integration, inclusion in the community, a more typical natural approach to how people live like everybody else. Leverage the community resources. We don't need special places, we don't need special rec programs, we don't need special gyms, we don't need special clubs. Reduced facility costs, oh my goodness, think about what it costs to pay the rent, the mortgage, the utilities, the insurance, and the upkeep on a facility for a day program or a sheltered workshop. There are examples in this country of how much money has been saved, which then was used to buy more staff and increase staff wages without rate increases. Those costs are very significant. The money should be spent on people, okay.

Transportation costs, you don't need the big vans anymore. Go out in the car, take public transportation, learn how to use it. Staff use more effectively, more efficient, and it's better for the individual and better for the community.

So what David summarized as the core values, which are consistent, you'll see with the settings rule: goal-oriented activities, a deliberate purpose, flexible supports customized to each person's needs, what a novel idea, not a program; rich and diverse activities; other community members without disabilities; and maximum participation in all community non-disability.

So now we'll look at the actual person-centered service plan regulation from CMS, and these slides, thank you CMS for trusting me, are the CMS slides. I have taken liberty with their permission to do some editing with bold type, but the text is unchanged.

So this is what is required and has been required since the Spring of 2014, different from the settings rule, all right. The plan must be developed through a person-centered planning process. Okay, that's a nice phrase to start with, what does that really mean? Well, we'll have to look.

It's driven by the individual. Remember earlier when we talked about the IEPs in school, and I showed you this graphic of the student in the middle, it's his or her plan, this is the person-centered plan for this person and they get to drive it to the maximum extent possible. And they get to invite people in that they want to be at the table. Could be a peer, could be an advocate, could be a family member, could be an employer, it depends where they are in life. Could be somebody they've met in social or recreation. They can say, "I want this person at my person-centered plan to help me do my advocacy for my life." Okay, that's important. Not well understood, but it's real and it's in the rule, it's not negotiable.

And the person directs the process, it's my meeting. I may need some support, I may need some help, but let me tell you what's on my mind, what I want to get accomplished, all right. Time schedule, it's not just between 9 and 4:30, Monday through Friday.

Think about this, if somebody's working part-time or if they're involved in certain clubs or activities, leisure stuff, and somebody says, "Well, we're gonna have your meeting next Tuesday at 10:30 in the morning."

"Oh, I can't do that, I'm supposed to go to work."

"Well, tell your boss you need to take off."

"Right, that's what I'm gonna do. It's one thing I have to take off for a medical appointment. This must accommodate my schedule as the person because no two people's schedules are the same."

Use plain language. We are amazing in this field with acronyms and jargon; we need to stop using that at the planning meeting. It's okay for some of the policy work; we have to get that in there, but then we need to translate it and make it easy. And there needs to be some discussion about if there's a difference of opinion.

Here again, offer choice to the individual regarding services and supports they receive and from whom. A core principle in Medicaid going back to 1965, thank you, Lyndon Johnson, freedom of choice of Medicaid providers. I don't have to have the same provider giving my housing supports, that's giving my community integration support, or giving my employment support. I can have three different ones if I want. I can have the same one, I can have two different ones, and I can change them 'cause I'm in control. I am not stuck with the ABC agency for the next 20 years. No, if things aren't going well and I'm not comfortable, they've had a change in staff, a loss, whatever it is, excuse me, we need to have another planning meeting, I want to get a different provider of support. That is legal and enforceable, all right.

And what's important to the individual to ensure delivery of services in a manner reflecting personal preferences. That comes from Michael Small's work on personal futures planning. What's important to, what's important for, so again, they've looked at the research, they've met with people to see how to do this. This isn't just happened in a bureaucratic office in Baltimore, Maryland, I promise you.

And then look at this, here we go. The language: DD Act, Special Ed, Voc Rehab, and now Medicaid plan. Strengths, preferences, needs, clinical and support, and desired outcomes.

Ladies and gentlemen, we have achieved alignment across all of our federal funding streams. And that is pretty amazing here in 2022, given that we started technically with special ed law in 1975, less than 50 years ago. That's a long time in somebody's life, but if we can look at it in a historian's perspective, 50 years is kind of a blip. We're not gonna lose a step here, we're gonna keep going forward.

And then look at this last one. Identified individual goals and preferences related to, oh my relationships, community participation, that's inclusion, integration, employment, income savings, healthcare wellness, education. That's the potpourri of a life, you get to sit and plan it and lay it out. And all of these are consistent with the core values for something called Partners in Policymaking.

My goodness, people with disabilities are People First. We have to stop using old language, they're not the handicapped or the disabled. Some people want to identify today as I'm autistic, that is their right, but I will talk about people experiencing autism. But if somebody wants to call themselves something, that's their right, but in our world we will use People First language.

People need real friendships, not just relationships with paid staff, and I appreciate that it's friendships, not natural supports, thank you, Dr. Wieck. People with disabilities entitled to the full meaning of the First Amendment to free speech. The ability to communicate in whatever form must be available to every person with a disability.

We talked earlier about the lack of understanding of assistive technology and devices, even worse is the limited access to alternative and augmentative communication and people who know how to teach people how to use it, so we have lots of work to do there. People with disabilities, full mobility and accessibility.

Okay, we go back to Denver, getting the lifts on buses, mass transit authority now, oh, let's start teaching people how to use the public transit system as opposed to going in the special van with the name of the agency, oh, there go the, you know who going into the city or whatever it is.

Continuity in their lives, family and neighborhood connections, relationships, respect, and dignity. If you think about what we just explained on the person-centered plan, that is the epitome of respect and dignity. The person is at the center, they get to bring who they want. They get to talk about what they want, and they get support to experience things, to make choices that they may not understand. That's a very respectful and dignifying position, and they need to be in a position to negotiate.

It's my plan, I don't want what you said, I want this, thank you very much, all right. Informed choice, got it again, all right. Homes of their choice with the supports they need, thank you ACL now, thank you HUD. And true productivity through employment.

So what you see here for those people who experience Partners in Policymaking is those core values are in full alignment now with all federal government policy.

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The GCDD is funded under the provisions of P.L. 106-402. The federal law also provides funding to the Minnesota Disability Law Center, the state Protection and Advocacy System, and to the Institute on Community Integration, the state University Center for Excellence. The Minnesota network of programs works to increase the IPSII of people with developmental disabilities and families into community life.

This project was supported, in part by grant number 2001MNSCDD-03, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

This website is supported by the Administration for Community Living (ACL),  U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $1,120,136.00 with 83 percent funded by ACL/HHS and $222,000.00 and 17 percent funded by non-federal-government source(s). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.