I/DD Topics & Trends with Jill Escher
Jill Escher, Housing & Care Obstacles of Individuals with Severe Autism
What is severe autism?
Jill: Sure, so autism as we all know is a very heterogeneous condition. It’s very diverse, from very high functioning, for example there’s some researchers, professors, teachers, lawyers, doctors with autism and then there are kids like mine who are non-verbal and have very significant functional and cognitive impairments. These people who we sometimes call severe autism, profound autism, classic autism, kanner autism, or level-three autism; People use different terms to apply to this population, but from a qualitative point of view they tend to have cognitive disability, functional disability, they tend to have need for twenty-four seven care or access to twenty-four seven care. They can’t earn a living, they can’t really care for themselves, and they need an ordinary sense of that term, so that’s really who we really represent, the National Council on Severe Autism. Often that population have complex behaviors in addition to the functional disabilities, so that could be aggression, it could be self-injury, property destruction, elopement, they could have comorbid medical conditions like seizures, and many other things. So definitely autism is not, as we know, one thing.
How large is the autism population and how has it grown over time?
Jill: Yeah. Well, the question of how autism has grown over time is, in my mind, the most important question. We have to understand how absolutely enormous this growth has been over the past thirty to forty years and what the implications of this growth are. There’s been abundant denialism about this. People saying oh you know it’s better awareness, it’s just us shifting categories, what they call diagnostic shift, it’s just a broadening of the diagnosis, and really none of that is true. There’s overwhelming data that autism has increased astronomically and if we talk just about let’s see our county, we’re both in Santa Clara county right now in California, Santa Clara County in 1990 in our regional center, which is SARC, had about 150 cases of autism in 1990. Today, there are more than 47,000. Alright, from 150 to 47,000, that’s a thirty-two fold increase and we know the regional centers don’t serve the broad spectrum. They only serve those who have very substantial functional impairments and are considered developmentally disabled. It is absolutely preposterous to blame the increase in autism on non-ideological or diagnostic factors rather than actual changes in the population. In the state of California we’ve seen similar trends. Back in the 80s there were about 3000 cases of autism in the whole state. Now we’re past 150,000, 3,000 to 150,000, do the math, that’s a 50 fold increase over more than thirty-five years. So, we’ve seen this trend really all-over the industrialized world and so far it’s completely unexplained except for you know a couple things having to do with prenatal factors, but that only explains a small amount.
Can you talk about your role in the autism world?
Jill: Well, when it comes to housing, I kind of play a lot of roles. First of all, I’m a consumer. I have a son, Johnny, who’s twenty-three and he has severe autism. He no longer lives with us here at home. He lives in a house that he rents from us because we have a business. We’re property investors. So I’m a consumer, I’m also a provider in that I have a small, mom and pop property investment company and we’ve been able to over the years provide more than fifteen adults with autism and other developmental disabilities with housing. I think we currently house thirteen such tenants, most of them in Santa Cruz, CA. We’re able to do that and hopefully we’ll get to this in our discussion because these tenants have vouchers that allow them to pay rent. Otherwise they would never be able to live in the community. All of these people have no income whatsoever except for SSI which we know is only about $900/month, which is a joke here in Silicon Valley to even think about $900/month as something you could possibly live on. I’m also an advocate for housing. Right, so I’ve been an advocate for housing when I was President of Autism Society San Francisco Bay Area. I engaged with many municipalities, many counties, many housing authorities, you know trying to drum up more and more housing opportunities for people in our area. And now, as the President of the National Council on Severe Autism, we’re really looking at this sort of national policy. We’re beginning to look at if it’s at all possible to make a change on a broader level than just county by county or even state by state. It’s a big task because as I said, this population has grown astronomically. And right now, about 90% of people with autism in the DDS system live in the family home. Most of them live with their parents, right? And, we parents, nothing against you and me Dana, but we’re getting old, we’re aging, all of us, and we are temporary, right? We’re this temporary bandaid over you know this horrible wound and we’re going to go away and all of these young adults and children with autism are going to need supported housing for the rest of their lives. We aren’t really talking about how huge this population is and their intensity of their needs. So, it’s really bad. To say it’s an uphill battle is the understatement of the century. I mean this is a huge crisis no one wants to talk about.
What are the options outside of the family home? What does that landscape look like?
Jill: Well, every state is a little different, but I can go through the hierarchy. Most people obviously live at home with family, usually parents, sometimes siblings, sometimes grandparents, sometimes aids that come in who are paid, usually through a medicaid program. So living in the family home in some fashion until the family is no longer there is obviously the most common form of autism housing even for adults, not just for children. The second one is what your son is doing and what my son is doing. Where they rent or maybe own their own house and that could be a condominium, it could be a townhouse, it could be a single family home, it could be a share in a limited liability company with other families. In that case, you are your own proprietor of your own home as the disabled person and help is brought in, almost always unlicensed through an agency, like a supported living agency or an independent living agency or something like a self determination program where you have a budget to spend every month or you can use in-home support services through medicaid or you can have even something else like my son gets services through the regional center through something called personal aid. He doesn’t have supported living services. Medicaid dollars and other dollars trickle down in different ways with different labels and medicaid dollars, federal money matched by state funds to a certain extent are then used by the consumers in this fashion. The third one would be the group homes. I think maybe or what you would call residential facilities you might know a little bit about that Dana. So when I say group home or licensed residential facilities I’m talking about a licensed entity in California under community care, and every state is a little different, and that’s you know could be two, three, four, five, six adults, sometimes children living together under one roof with support and one agency runs everything even if they’re renting the property. It’s not like supported living where it’s fragmented. It’s a little more all-inclusive, a little more wrap around. The fourth one, I actually referred to this before, but I would separate it out. The family LLC, that’s when a bunch of families get together and buy a property together. This is a lot more cost effective for people and it also provides a community a lot of families and individuals really strive for. We see that kind of growing in popularity, we see families coming together. It’s a complicated endeavor to do one of these projects, but we have a few of them now in California and I’ve heard of others in other states. Again, a lot cheaper. By the way, if you’re not here in Silicon Valley, buying your own home is going to cost you $1.5 to $2.5 million dollars. Most families can’t do that, so going together as a group is often a more viable solution. There’s another thing that we have here in California and I think they have in other states, adult foster care, where basically the adult is placed with a family. Sometimes that works for people who are higher functioning. It’s really not a solution for those with severe behaviors. Shared living models, they have different names like have you heard of things like Camp Hill, where there’s like a farm community and people with disabilities and without disabilities all live together seamlessly in this kind of very creative solution and it’s very mission driven. There are also things called Intermediate care facilities for the developmentally disabled, which are also funded by medicaid and there are public ICFs and there are private ICFs. Those tend to serve adults who are much more severely disabled than those in the other forms of housing. So, I kind of gave a lecture there, but you asked about the different forms of housing, and there are even more than that. I think that those are the top ones off the top of my mind.
Why is it harder for someone with severe autism to find housing and care?
Jill: Well, again, it depends on the state and the kind of problems we encounter. But, here’s the story that we hear more often than not goes like this. The child with severe behaviors is somewhat manageable until puberty and early adulthood, and it’s usually a boy, sometimes a female, but usually it’s a male. They become very, very strong and they overwhelm the capacity of the parents to keep them safe, to keep the siblings safe, to keep themselves safe. This is what happened with us. I’ll be very frank, with our son when he turned twenty, it was impossible for us to keep him at home. It was constant trauma at home, constant destruction, and aggression that we were completely unable to control, and this is a very, very common story. So what happens is the parent will usually go to the medicaid authority, like here it is the regional centers in California, in other states there’s other types of agencies, desperately seeking help. Quite often, even here in California, the regional centers will say sorry we have nothing to offer you, and then the parents really look desperately for help in the home through agency help, aids, assistance who can be at the home and help care for the child. If it’s a single mom she might need a large man quite literally to live in the home with her. Usually the parents need to fight tooth and nail. Sometimes they end up just taking the adult or older child to the emergency room looking for crisis help, and usually the ER has no idea what to do and there is no place to discharge them to. Now there are exceptions to that, but by and large we are living in a time with immense crisis without adequate facility placements for this very complicated adults. These are adults who need psychiatric care, they need medical care, they need behavioral care, they often need very specialized amenities in their residential facility to keep everybody safe. They often need access to the outdoors. My son wants to be outdoors 95% of the time. He would never be able to live in a small home, or an apartment, or a condo. Never. The biggest thing is staff. Finding the staff who are able to come in and help the adult either in the family home or outside of the family home. You know more than anybody that we’re experiencing an immense staffing crisis that has been exacerbated with COVID. And you know this is a problem both from supply and demand. The demand keeps growing and the supply is either flat or dwindling, so you get it from both sides.
Are there other resources people can turn to besides regional centers?
Jill: Well, in California if you have severe autism and you need housing, the regional center will usually tell you we are not your housing provider, right? They will say we can provide you services, which comes through these medicaid trickle down funding streams, but we are not a housing provider. Now, that said, sometimes the regional center is the housing provider, sometimes they do end up paying the rent. But, they don’t want to be in that business. It’s expensive for them and they would rather use what are called generic resources, resources in the community. So, for the brick and mortar part of the housing equation, for somebody with profound disabilities who has no real income except for social security, what are the options? Option number one, I think really should be the housing authorities, so every county or region depending on where you are has a housing authority that gets money from the federal government through the department of Housing and Urban Development Hud to fund housing programs for low income and disabled people in their catchment area. And this mechanism has worked astonishingly badly for the I/DD community, shockingly badly. We are really in the dark. I think Hud is completely in the dark when it comes to the needs of this community. Hud has a couple programs. They have something called Aid Eleven, and that provides grants to developers basically to create disability oriented housing, but there’s been this crazy cap that Hud Aid Eleven funds could only fund projects with maximum 25% of people with disabilities, which is in my mind not only out right discrimination, but out right contrary to the intent of these programs and these laws. Beyond Hud Aid Eleven, I’m sure almost all of the listeners have heard of Section 8, also called Portable Housing Vouchers. Those in our area are very hard to get, and what the portable vouchers would do is they would give the disabled person basically the vast majority of their rent, their monthly rent. It’s a rent subsidy and it’s a very valuable rent subsidy, but very hard to get even for the most extremely disabled adult. There are long waitlists, a lot of people want the Hud Vouchers, and there are a lot of interest groups already in line, some of them are people who are just poor, they have no disability at all, but they are just poor. Then there are homeless, and then there are veterans, and then there are the mentally ill, and there are all these other constituencies that want Hud vouchers. I/DD are always at the bottom of the list. We get no priority. The only time I’ve seen us get priority, again in our area, is for the individuals who are exiting institutions. And as we know, in California, there are no institutions left. There are virtually no adults with autism left in an institution in California, so on paper it looks like there’s a priority program, but in reality there’s really not. So many of my tenants because I do have this mom and pop housing business, some of them had exited institutions when those institutions were around, others got Section 8 vouchers through a waitlist system, but it’s very hard. My tenants are incredibly lucky and they’re very rare. We need to make this not rare. We need to make these vouchers available to every adult with a severe cognitive disability who can’t earn a living and care for themselves. That should be national policy and we’re no where close to that. Now, there are other resources for housing. There’s something called sedicides. What happens is in municipalities under state law and sometimes other laws, new developments, let’s say you’re building a 100 unit apartment complex in Sunnyvale. You have to set aside 5% of your units, let’s say 5 units for adults with developmental disabilities. And that would be a permanent low rate, let’s say $500/month instead of $2,500/month for a nice apartment. The sedicide program works for some people. It’s okay. It’s a terrible thing for adults with severe autism or severe I/DD, for most of them, a terrible system because that arrangement, those settings are not appropriate for them. Also, sometimes, the income eligibility is far above what our population has. You have to be low income, but our kids are not low income, our kids are like extra extra extra low income and they don’t even qualify for these programs. There’s some really deep flaws in how we are providing housing. Now, if you’re in a group home or something like that you’ll write over your SSI check to the group home and that’ll pay part of the rent. You know better than me what other sources might be. There’s also private fundraising and special needs trusts and able accounts, private funding, but a lot of families don’t have that kind of access to those sort of options. They don’t have trust fund babies.
Why is it harder for someone with severe autism to find housing and care?
Jill: It’s hard enough to have an intellectual disability, but then to have severe autism on top of it. I want to say something I think is really super important for everyone to understand. That most of the medicaid dollars go into what’s called HCBS, not into the Intermediate Care Facilities, but into what’s called home and community based services, and those home and community based providers by in large, I’m sure there are exceptions here and there, can pick and choose who they want to serve. The group home, whose recipient of HCBS funds from medicaid can say well we have a choice between Johnny or Sammy, and Johnny wrecks the furniture, hits other people, bites staff, so we don’t want Johnny. We want Sammy who’s nice and quiet and will sit and watch TV with us and will help us make dinner and smile all the time. This is a phenomenon that has the effect of excluding from services a huge portion of the severely affected population. People don’t understand that just because there’s medicaid money coming down the pipe, that doesn’t mean it’s going to reach the consumers who need it most. The consumers who need it the most are often excluded the most because of the fact providers can pick and choose. So listen, I know how hard it is to live with a strong young man with severe autism. I’m not here telling anyone it’s easy, it’s really hard. But what we need in medicaid is a provision that specifically addresses this population and ensures they have access to the care we need, and we do not have that right now.
How can families find resources about forming an LLC for housing? How can an individual work with the state to open a home?
Jill: What we’ve seen with these family groups that have come together and formed LLCs is that they’ve been very willing to share information on how they started. Some of them like Anna Wang, who was absolutely famous in our area and is a total hero. Anna Wang was one of the founders of something called the Perolta Apartments that pioneered this model, it’s in Fremont. I think it’s a 16 unit apartment complex. She inspired other people to do something similar. There’s one now in Santa Cruz called Coastal Families, and I think that’s about sixteen maybe twenty LLC partners as well LLC members. I can not tell you how complex and difficult it is to do something like that at that scale. I’m not going to pretend like oh you just have this LLC agreement and put it on Facebook and all of a sudden people show up, no. I mean it’s like marriage. But instead of a marriage between two people, it’s a marriage between sixteen families. That said, with a lot of sweat and equity, these people are finding a good measure of success. It’s not like this is futile. But these people tend to be very happy to share their operating agreements and some background on how they came together.
If these group homes aren’t appropriate for their child, what is the next option? Specifically, how can they find caregivers to handle aggression?
Jill: It is very hard to find a group home willing to take a child or adult who has aggression, self-injury, property destruction. In California, the regional centers through the department of developmental services have started something called enhanced behavioral homes. There aren’t very many of them. They’re kind of like a pilot project. They’re enormously expensive from what I hear. I’ve heard it’s been a lifesaver for some people, and for some people it’s been a nightmare. They’ve encountered massive neighbor problems. Neighbors don’t want these enhanced behavioral homes in their neighborhoods. They call it a nimby problem, but sometimes it’s not just nimby, sometimes there really are issues with noise, issues with other things. There usually aren’t. I’m a big fan of homes in the community, believe me. But sometimes there are problems with homes that are legit. Beyond the enhanced behavioral homes, how do you get staff? Well, some supported living agencies have staff capable of dealing with these issues because as I said, those are very rare. They can pick and choose and they tend not to choose them. Staff, their wages for in-home support services, the wages for SLS services, the wages for personal aid services, which my son has some of, those tend to be pretty low. They’re close to minimum wage or a couple dollars above minimum wage. And so people who have the ability and the smarts and physical ability to deal with severe behaviors often are able to get much higher paying jobs, so it’s very hard to attract staff. We need to have much more recognition of this level of need. I remember a couple years ago, I was talking to someone who works in DDS, the Department of Developmental Services, about the closure of the institutions, and he had worked for decades in the system. He said, Jill , you have to understand we closed the institutions not to be ‘do-gooders,’ we closed the institutions because we were paying those people psych, tech, union wages of $35/hr and we didn’t want to pay it anymore we wanted to pay minimum wage in the community. That was the reason, that was the main purpose behind closing the institutions. And I said yeah, well then you’re not going to get the same level of care that you would’ve had with a trained psych tech. And he said yeah, well we all knew that would happen, but the system was willing to sacrifice quality. We’re seeing that now, we’re seeing what everybody knew would be the consequence of paying people minimum wage for these complex cases.
Is Claradon properties reproducible and how can they start something similar in a different part of the state?
Jill: Wow, that’s a really good question. The model that my husband and I used to start our business was basically pure investment. We decided we weren’t going to be a nonprofit, we weren’t going to go for grants, we weren’t going to go for any kind of fancy financing, just pure investment. But, this is what I always tell people: if you want to do what we did you have to be willing to be a bad business person. That’s the secret sauce. If you go into it with a conventional developer mindset, a conventional landlord mindset, you will fail because you’re not going to make the kind of money that your friends are making doing market rate housing. So I went into it with the mindset that I was willing to be a bad business person, I was willing to leave a lot of money on the table to do this work because it was a business, but it was sort of a semi-philanthropic business for me. If you’re willing to make from the start at least maybe 1% return on investment, you can succeed. If you want to go into it thinking I’m going to make 5,6,7% you will fail. Especially in this area, real estate is outrageously expensive, I don’t even think people could make 1% now if they’re doing below market rate. But if you’re getting market rate through Section 8, again, very hard to get, you could probably do it. Although, financing has become harder with the recent interest rate, and I won’t get into that math. I just want to stress that it is possible to reproduce what we do. The two secrets: bad business person and get tenants who have Housing Authority subsidies.
How can parents advocate for their children?
Jill: Well, with advocacy there’s strength in numbers. At the National Council on Severe Autism, NCSAutism.org, we’re actually starting something called the National Grassroots Network and you can easily sign-up on our website. It only takes a minute to do so, so that’s one option. Another option is for example Autism Society San Francisco Bay Area, if you really wanted to be a good advocate you could see about joining a committee, even joining the board of something like Autism Society or wherever you are what is the group that is doing that kind of work. Talk to your elected representatives about your problems, letting them know, but I think working within an organization is more useful.
What can people do to help the National Council on Severe Autism?
Jill: Go to our website, https://www.ncsautism.org, learn about us, sign-up for our newsletter, subscribe to our podcast, sign-up for our National Grassroots Network, it’s all there on the website. If you can donate, of course we’re always happy to accept donations, if you can serve on the committee, or if you have a certain amount of expertise, we’re always looking for people with expertise in certain areas. You can contact me for more information, Jill.Escher@gmail.com.