Scott Mendel, Advocacy & Choice for I/DD Individuals

What is Together for Choice and how do they serve I/DD individuals?

Scott: Together for Choice is a national disabilities advocacy organization. We’re about sixty years old and as our name implies, our mission is to ensure that the individual and the individual’s family have a wide array of residential and vocational services to choose from and that the choice is that of the individual and the individual’s family, not some government bureaucrat. We recognize that the disabilities community is very diverse, there’s a wide range of needs and preferences, and therefore we believe that there needs to be a wide variety of settings, both residential and vocational that are adequately funded by the government, so that individuals can choose the setting and the services that best meet their needs and preferences.

Can you discuss your advocacy work at Together for Choice?

Scott: We do advocacy work at all levels of government, the federal government certainly, but also at the state and local levels. It takes a variety of forms. We certainly keep a watch on proposed legislation in congress. We advocate regarding regulations, principally with CMS, but sometimes with the department of labor, sometimes with the department of justice. At the state level, similarly, we keep a watch on legislation there that might affect our membership. And you know, just one example of a regulation we’ve been deeply involved in that we want to talk a bit more about this evening, is the home and community-based services rule, which was adopted by CMS in 2014, and we’ve been advocating with respect to that rule, a rule that is a federal rule, but it is enforced at the state level, and so, we do advocacy work regarding what’s called the setting rule, both at the federal level and the state level as well.

So does this have to do with the notion that big settings are bad and small settings are good?

Scott: That is certainly a prevailing point of view among other disability advocacy groups and amongst certain folks in government. So yes, we are one of the reasons why TFC was formed to fight against that notion. In our view, small can be good, big can be good, small can be bad, big can be bad. We all are aware because it gets a lot of press coverage when there are abuse and neglect situations in larger congregate settings and those are horrible. The truth is, the same goes on in smaller settings as well. It is not the size of the setting that is a cause or reason for abuse and neglect or deficient services. It has to do with funding, who are running these settings and the employees there, and having appropriate government oversight. A lot of what we do in order to explain to our government folks that big can be good and is good is we bring to them families who have had family members live in smaller settings, not do well in those settings, move them to a farmstead, intentional community, or campus setting, where they have thrived because of their specific needs and preferences and we have found that to be very effective. Folks who have an open mind understand. That there is not a one size fits all resolution, both on the residential side of things and the vocational side of things. And that’s really what we push, simply not a one size fits all solution.  

How does Together for Choice advocate for these communities? Tell me about some of these communities that you see as really doing it right.

Scott: Misericordia is an organization that’s now fifty years old in terms of its servicing of individuals with disabilities. It started back in 1969. It’s got a nationwide reputation. It serves over 600 men and women. It has a waiting list that is hundreds long to get into Misericordia, which speaks to the quality of services that it provides and my daughter has lived there now over three years. She lives in a home that’s on the campus. Misericordia operates a campus which has intermediate care facilities on the campus, individual homes that are classified as intermediate care facilities. It’s also has a skilled nursing facility on the campus and it has a day program on campus, and it also has fifteen homes and neighborhoods around the campus that are home and community based settings, so it has what we called a full continuum of care, and individuals can move from one setting to another as their needs change and their preferences change. And this becomes so important today because of the great care folks are receiving, they’re living longer than ever before. And as we know, especially folks with Down Syndrome, they start having symptoms of aging earlier than the general population, and so a person with down syndrome may be living in a home in the neighborhood and doing just fine, but when they get into their forties or fifties there may start to be a decline where they need more intensive services and they can be brought back to a home on the campus and served there. It’s a great place because it has everything that someone needs for a lifetime of their care.

How about some other examples?

Scott: I hate to point out one’s over others. Obviously, there are many folks who are members of Together for Choice. Opportunity Village in Las Vegas in your neck of the woods is a great organization. It started primarily as providing vocational services to folks and has now expanded into residential services. The Ark of Jacksonville in Florida, another member of TFC, has some wonderful services. Marbridge down in Texas, Annandale Village outside of Atlanta. Obviously, I don’t want to go through a list of everybody, so anybody listening who I have not mentioned please don’t be offended, but there are many, many great organizations. It’s a wide variety of settings, some are intermediate care facilities, some are home and community-based settings, some are campus settings, some are farmsteads, but that’s the whole point is that we need a wide range of settings and we support a wide range of settings and we are not opposed to people living in small homes in neighborhoods, that’s great for those whom it really works and we like those and we support more funding for them and we support ending waiting lists for them, but we also support other kinds of settings, farmsteads, intentional communities, campus settings, intermediate care facilities because those meet needs for certain folks as well. 

In your opinion, what is the most monumental change Together for Choice has done for those with I/DD?

Scott: What really brought Together for Choice together was the CMS adoption of this home and community-based service and rule, and it caused a realization among some service providers and some families, and some individuals that boy the movement to close larger facilities and move everybody into small homes and communities has really apparently gotten some leverage in DC and now we’re facing a rule that could be extremely difficult to deal with, and so we also saw a an opportunity when a new administration came in in 2017, that one of the platforms of that administration was less regulation, less government involvement in people’s lives, deferring things more to the states, and so we thought okay the setting’s rule is prototypical, the kind of rule that more conservative folks, more folks who are members of the republican party might see as this is overstepping where government should be. So we felt this was a good opportunity to go to CMS, sit down with them, and say this rule is really problematic because it limits choice, it limits the kinds of settings that qualify for federal Medicaid waiver funding, and it really needs to be amended. We marked up the rule and said these are the things we think should change. We kept in as much of it as we could and only suggested changes that were little of it as we thought was necessary. We said if you didn’t want to change the rule, at least change your guidance because there was guidance under the rule that said that farmsteads, intentional communities, campus settings, were presumptively segregating and had to go through this heightened scrutiny process that set forth the rule, and we said that’s not right. You can’t just presume that a setting, suppose it’s a farmstead, intentional community, or campus setting, is segregating. They’re not, they’re not all segregating, and there are many that are not, and we use Misericordia and other places as examples. And it took a lot of advocacy, and ultimately CMS decided they didn’t want to amend the rule because that’s a whole process they have to go through which they had just gone through to enact the rule to begin with, but they did issue new guidance. They revoked the 2014 guidance that was issued along with the rule and issued new guidance in March of 2019 which said that the farmsteads, intentional communities, campus settings are no longer presumptively segregating and no longer must always go through the heightened scrutiny process. You have to evaluate them individually and you have to look at the individuals living in these settings and whether they’re living the lives they’re choosing to live. So you can’t assess a setting by saying well how many times does somebody go off the campus and receive services of the campus or engage in activities of the campus. Question is is that person getting the services and the community engagement they want, that might be once a week that might be five times a week, it depends on the individual. Is the individual living the life they choose, and that’s a lot of what that new guidance says. I don’t want TFC to take full credit for it, there were other people advocating for it as well, but I think we were instrumental in that change. 

How can we all be better advocates?

Scott: Obviously, we’d love everybody to join TFC. More generally, what we found that really works is to engage with your government representative, both at the local, state, and federal levels. Get to know them and get them to know you and have them come to your place, your residential setting where your child lives or the vocational setting where your child spends their days. Have them see the good work that’s being done, and that really opens their eyes. What you have to realize is members of congress and even members of state legislators, they have tons of stuff on their plates. This is one issue out of thousands they deal with. You can’t expect them to be experts in it, you’re the expert in it, and they’re willing to be taught, most of them, are really willing to be taught. And so every opportunity you have, engage them, and it’s best to do that before you need them. So that when you do need them you call them up and say hey there’s this bill in congress that could really be a problem for my child. They already know you and they already know your situation and oftentimes they are really willing to help. And so it’s work, it’s effort, and we all have busy lives, especially when we have a family member with special needs and that takes up a lot of time and a lot of energy, but it’s really an effort that is very worthwhile making because it can really, really make a difference. Otherwise, they’re just hearing the voices of some of these national disability organizations that are really advocating for folks who are higher functioning than my daughter for example, and are proposing solutions that are great for the folks they are advocating for, but would not work for my daughter, and our government officials need to hear another voice, need to hear multiple other voices, so they realize the diversity of the community that we are a member of.

Where is a good place to learn about the different housing options for those with IDD or physical disabilities that are more independent in nature?

Scott: That’s a great question, actually very timely as far as TFC is concerned. Our national coordinator, Ashley Kim Weiss, actually just put together, and it’s on our website, an extensive list of residential facilities throughout the country. It goes state by state, and it’s by no means complete and it’s a living document and we’re working to add on, in fact we invite people to add onto the list, tell us what’s missing that they know about and send that, email us with those names. But that’s a great place for folks to start. It doesn’t have a ton of information about each place, it just tells you where it’s located, gives you the website, so you can go check it out yourself. We wanted to be very careful that we don’t populate it with information that may not be accurate or may be more opinion as opposed to fact, so we don’t go into a lot of detail about each site, but at least it’s a place to start, and you can go to the website and that will tell you the population that they serve and the kind of services they offer, and that sort of thing.

Dana: That sounds really good. In fact, that’d be quite useful because I find particularly for these intentional communities there isn’t really a place to find out about them other than often word of mouth. I heard pretty high functioning folk who want a more independent environment and so typically service model wise a lot of folks might get services to be more independent living at home or getting their own place, apartment, community, and get what’s called independent living support or maybe supportive living services. You almost have to explore that locally and oftentimes people get assessments to start to better understand what kind of support the individual needs to do what he or she wants to do, what their goal is and suggest trying to get in touch with an independent living or supportive living service provider and ask them for help understanding options. Here, locally, there’s organizations like Housing Choices, Parents Helping Parents, that often have resources that might be helpful for that kind of question.

How do you work to promote informed choice and advocate for thoughtfully supported exposure to multiple options for consideration by the person with the disability?

Scott: I guess there are a couple things I would say. One is obviously it is very important if you’re a parent or a sibling and you’re trying to find an appropriate residential setting or vocational setting for your family member. The burden largely falls on you to look locally at what are those resources that are available in your area. Often there are state agencies that can help you. You want to be a little careful because, again, you’ll find that some of these folks do have some biases and they show you only certain types of settings and not show you others. One of the things we advocate for is to make sure that these agencies that are there to help people find an appropriate setting, do make sure that they’re providing all the options that are available so the person can make an informed choice. I think it’s fair to say, at least from my perspective, the burden largely falls on the individual in the family to do all the research that can be done to find all the various options that might be available to you.

Dana: Yeah, I agree with Scott. The burden unfortunately falls way too much on the family member. There are some resources, earlier I mentioned Parents Helping Parents or Housing Choices or the Regional Center. I always send people to try and get help through their service coordinator, and ideally, their own research will lead them to service providers and other sources of information that will be useful. When it comes to living outside of the family home there’s really not a whole lot of different models. On the one end of the spectrum, Scott did a great job articulating these intentional communities, they can take a lot of different sizes and shapes and then there are residential care homes, and basically, folks have their own apartment and get some level of support and then there’s the family home. So the residential models are fairly limited, you can always come up with variations of each, but I encourage people to go out and learn about each of those and if possible get out to see them. Go visit, go see what they’re like, and there’s no shortcut to seeing firsthand and meeting people and seeing how they live in their home or vocational or day programs. Day programs are a whole other area where there are a lot of different sizes and shapes and a lot kind of comes back to what that family member wants and would be interested in. Sometimes that’s not always obvious.

Does the newer CMS guidance apply at the state level? How would I obtain the information in written form and regarding local government where should I begin city council planning and zoning, etc.?

Scott: Yes, so the settings rule and the guidance under it do absolutely apply to the states. It’s a feature of our Medicaid system, which is a federal and state shared program. The feds fund part of it, the states fund part of it, the percentage of the sharing varies by state, depending on the wealth of the state. As a result, you have both federal rules that apply, state rules that apply, and the settings rule is a rule at the federal level that requires the states to actually enforce the rule in the state. I mentioned the modification to the guidance that we were able to get in 2019, then our next step after that was to make sure that the states were aware of the new guidance, even though it was sent to all the states by CMS, there were still state regulators that were not aware of it and that the states were properly applying the new guidance. We had a situation just recently, for example, in Oklahoma. There was an organization called A New Leaf in Oklahoma that was opening some new residential settings. It wanted the state to approve it for its Medicaid program, its waiver program, and Oklahoma kept turning it down, and the reasons it gave were under the old guidance, and we got involved to help. We had to go back to CMS and say can you please talk to the folks in Oklahoma and explain to them your new guidance, and when CMS did that, Oklahoma said sorry you’re now approved. It sort of boggles the mind. You think you shouldn’t have to do that, but you do, and we’ve been doing this in a number of other states too, where states have been reluctant or just uninformed about applying the new guidance, which, as I said, opens up the opportunity for more types of settings to qualify for Medicaid waiver funding.

What is your experience with supportive housing models for individuals as subsidized by HUD and other entities?

Dana: Well, many of us personally have seen how beneficial the HUD based funding can be. Here in CA, we call that qualifying for Section 8, and ultimately the lowest income possible and our I/DD folks and HUD programs can help subsidize their housing to bring it within reach, particularly in a high cost real estate state like California, are life-changing. But Section 8, HUD funding has been more or less, at least in my impression, limited or frozen forever. We would love to advocate for more HUD subsidized housing for this population. It’ll allow more individuals to get their own place, which they can’t with the SSI or SSA funding that they get under Medicaid Medicare, so it all makes it possible.

What is the basis for the thinking behind the mindset that one size fits all and all individuals with developmental disabilities belong in group homes?

Scott: I wish I could tell you. Again, I just think there are some folks that believe that everybody will do better in smaller settings, and that actually may be true for even 90% of folks with disabilities, but we can’t forget about the 10% that need a different kind of setting. I’ve talked to the advocates about why it is that they feel this way, and a lot of them will cite some older studies that were done about that really if you look at it measuring large state institutions against smaller homes and things like that. Things have changed a lot since those studies were done and I’m not sure those studies looked at necessarily the right parameters, so I honestly don’t think there is data today, current data today, that suggests that small group homes are the answer for everyone. They might be the answer for most folks, but it’s the same thing at the vocational level. Advocates want to get rid of 14-C, the Fair Labor Standards Act, which allows special wages for folks with disabilities under certain circumstances, and people characterize it as a Civil Rights issue, everybody should get paid at minimum wage, and I get it, I understand what they’re saying, but what they’re basically saying, from my standpoint, is that my daughter will never have a job if that’s the rule. If an employer has to pay my daughter $15/hr, she won’t get hired because, regardless of what support she gets, she can’t do $15 worth of work, but she can under a special wage, with appropriate support and appropriate setting, do a job, and she has been doing those jobs, and she loves them because she feels valued, she feels like she’s doing something important, and she does not care what she’s getting paid. She doesn’t know a quarter from a nickel or a dollar bill from a five-dollar bill, but she does know doing a job, and so I want her to be able to do a job and have employment and the only way is to allow 14-C to continue for those folks. But again, the advocates say no, there’s one size fits all here. Everybody must earn a minimum wage, period. And if you can’t then you don’t have a job.

Dana: Well, I’d like to also add that there hasn’t been a bias towards group homes. In fact, exactly the opposite. One of the first HCBS guidelines was group homes should be no more than 4 instead of 5 or 6, which they can be today. Again, not based on anything factual, here in California, the group homes rates have been squeezed for decades causing a significant number of homes to go out of business while the demand increases. This should certainly not be interpreted as any kind of favorite status. What’s really at stake here is one size does not fit all and there needs to be a continuum of care, and the individuals who need the highest level of care have just the same rights as those who need the least amount of care. We need to look at it one person at a time and always from their standpoint, and I think generalizations are very, very risky, particularly with this population. I know that it’s hard at times, but we just need to stay focused on the individual and his needs.

What is it about the larger setting specifically that seems to work better in your experience?

Scott: My daughter, just using her again as an example, just has a tremendous number of activities and options that she can choose from to fill her day in the larger setting, and we’re talking about social activities, we’re talking about vocational activities, as well as other services like therapeutic services, medical services, and we have a choice, we can have her use services off the campus, and we do in some instances, but we have the opportunity to allow her to choose the services that are offered on the campus, and it really gives her a very full life. She’s engaged with many, many different folks of a variety of abilities, including folks without disabilities, and she gets off the campus quite a bit. Obviously, the pandemic has had an impact on that, unfortunately, and we’re just now coming out of that a bit. I find that the larger settings can offer a lot more, at least to folks like my daughter, with mobility issues and behavior issues and other issues that make the convenience of these activities and services much better for her. The other thing I take comfort in a larger setting is there are lots of eyes, lots of eyes watching, making sure that things are done properly, and that there isn’t abuse and neglect. I feel as a parent much safer for my daughter in a larger setting, obviously at Misericordia, I haven’t experienced other large settings so I don’t want to speak universally, but I had concerns with her being in a small home where there’s one staff person, maybe two staff people and there isn’t some other folks who have their eyes on what’s going on.

Do either of you know of services like Good Shepards Fund that helps manage a special needs trust or financial needs of those with disabilities after their family is no longer alive?

Dana: I do. There’s a Shepherds of the Valley here in California and from time to time I’ve seen families get them involved when they wanted to continue to have guardians looking out for the welfare of their son or daughter after they were gone, maybe there weren’t other siblings involved. So in that sense a guardian to hire, so they don’t do things for free or without compensation, but they can be a tremendous resource if you’re trying to figure out how to transition the role that you take in your son and daughter as they age and you fade out of the picture.

Scott: And I’ll put in a little plug here for TFC, we’re actually going to be putting on a webinar this fall for guardianship and special needs trusts that families can establish to provide for their family members when they’re no longer around. And obviously you need to be very careful with those because if your son or daughter currently qualifies through Medicaid funding that there are limits to the assets that person can have access to and so that’s why these trusts need to be very carefully designed, and there are lawyers available who specialize in those things to make sure that it’s structured in a way that the funds can be used to the benefit of your family member, but the family member would still qualify for Medicaid funding.  

How does advocating for individuals with an intellectual or developmental disability change their lives?

Scott: Obviously, when we advocate for them we’re advocating for the things that they need. For example, when we advocated for a more permissive interpretation of the settings rule, what we were doing was trying to make sure that folks that would benefit from living in an intentional community, campus setting, a farmstead, who don’t need the intensive services of an intermediate care facility, but nonetheless would like a more congregate type setting, they can get the setting that they need and we have personally seen, as I’ve said, where folks who have moved from their apartment or from a small group home to some of these larger settings have really done much, much better. They have been able to get off some of the medications they were on, they were able to lose a lot of weight. Not only did their physical health and their mental health improve, their behavior improved so we can see that this kind of advocacy really does make a difference, absolutely.

Dana: I guess here in California, there was considerable advocacy that’s gone on to get the state to change the rate structure and to reflect regional cost differences and incorporate increasing costs overtime and it was a hard sell. The beneficiaries of that were the people who were served and the staff who are employed by service providers, but the politicians saw it as nothing more than a request for a bigger budget and so, this was an example where advocacy needed to be communicating those stories and understanding how those rates would ultimately lead to better services, more capacity, higher wages for people who are struggling to stay here and stay living in high cost areas like Santa Clara County. There’s a role for advocates in all levels of government and I’m really hopeful we’ll see positive changes with the rates that have just been substantially increased here in California.

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