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Good morning, everyone. This is Samantha Crane from the Autistic Self Advocacy Network. We are right about to start our Webinar. This week’s Webinar is about employment and day services under the new home and community based services rule. I will just wait for another minute or so to make sure that everyone can sign on. All right. We’re ready to start the Webinar. Welcome, everyone, to the fourth of a series
of Webinars about the home and community based services rule that came out earlier this year. This Webinar’s topic is employment and day guidance. And we’ll be discussing how the final rule applies to nonresidential home and community based services including employment services and day services. This Webinar series is presented by the Collaboration to Promote Self Determination. And I’m presenting this on behalf of the Autistic Self Advocacy Network. Just to give a quick introduction of myself, my name is Samantha Crane. I’m an attorney with a background in disability law. I have a history of working at the Bazelon Center for Mental Health Law and I focused on Olmstead
and community integration issues. I am now the director of public policy at the Autistic
Self Advocacy Network. And just because I have to, I will say my views in this Webinar are based
on my analysis of regulations and programs but
they are of course not legal advice. They’re more just focusing on my own take of what the regulations mean. Everyone� I think most people on this Webinar have some familiarity with the HCBS rule at this point. But I’ll just go through some of the key points of the final rule so that I
can refer back to them when I’m discussing the employment and day services. One thing that the rule requires is that any setting, any service that gets funding through federal funding through Medicaid home and communitybased services program needs to be provided after a person has a center planning process. That includes the people chosen by the individual to decide on services. It needs to present a person with a range of options
and the information they need to make an informed choice. It needs to be reviewed periodically, and most importantly, it needs to involve
a conflict of interest protections. Typically, we’re not going to see service providers as part of the personcentered planning process. And by “service providers,” I mean people who are providing services under the
plan. You could definitely have a service provider that’s only there to run the person centered planning process but aren’t represented in
the person’s service plan that’s developed through that process. But we want to make sure that a service provider that’s going to be providing day services
or employment services to the person isn’t also guiding the person centered planning process because then they can steer the person toward their own services instead of allowing the
person to make an informed choice. The settings have to be integrated into the community. They need to maximize opportunities to seek employment and work in competitive integrated settings. They need to maximize people’s opportunities to control personal resources and receive services in the community. They also need to be consistent with the person’s individual choice, right to privacy, dignity
and respect, freedom from coercion and restraint. And they need to facilitate autonomy, independence and choice of services and supports. These requirements, again, are in the final
rule, and they apply to all kinds of services, including both residential and nonresidential services. These are very general requirements. Another thing to keep in mind is that these requirements are all separate. They� all three of them need to be met, so not only does the setting have to be integrated into the community but also it needs to provide rights such as dignity, privacy and respect. It is not enough to show that only one of
these factors is met. We need to show that all of them are met. The final rule really focuses on the nature
and quality of individual experiences more than
it focuses on specific issues, such as the number of people who can be served or the exact model of service that the person is using. But what really is important is that the person has
to have maximum opportunities for community integration, and that’s to opportunities need to explicitly include the opportunity for competitive integrated employment. We need to maximize opportunities also to control personal resources and engage in community life. One of the things that we really need in order to maximize those opportunities is allowing people to manage their money to the extent
that they are interested in and able to do that. And we need to maximize a person’s opportunity
to participate in the community. Now, a steady income is going to really improve a person’s opportunity to participate in the community. If you want to see a movie, you need to be able to afford to go to the movie. If you want to go out to dinner with your friends,
you need to have at least enough pocket money
to pay for dinner with your friends. When a person is not making a living wage
or not economically self sufficient, their opportunities to participate in community life are going
to be a lot lower. The regulations also include a set of� a
set of kinds of places that are presumed to be institutional. And, again, these are both residential and nonresidential settings. They need to be� if a setting is a publicly or privately own facility that provides inpatient treatment like a hospital or if it’s on the grounds of a public institution or immediately next to a public institution, then it’s going
to be presumed institutional and not eligible
for home and communitybased services funding. States can still run these programs but just not
through their home and communitybased services setting. There’s also a catchall. So any place that has the effect of isolating individuals receiving HCBS from the broader community are also going to be presumed institutional. And one of the examples that CMS has given for this kind
of a setting is, for example, a place where a bunch of disability-specific services are colocated and operated by the same provider. So let’s say you have a campus where a person is living
and also receiving day services and also receiving medical care and also� you know, there is
a store that caters specifically to the people with disabilities living in that place so
that they almost never have to go off of that campus, that kind of a setting is going to be presumed isolating and presumed institutional. If a state wants to use HCBS funding for services in this kind of setting, they’re
going to have to get� they’re going to have to
send in a proposal to CMS justifying that specific setting and get an exemption from CMS that
sort of says, yes, this is, in fact, not isolating people. CMS is not going to give that exemption unless it actually finds that the setting is not isolating. It is not just whether the setting is good or whether or not people chose it. It actually has to be nonisolating. This is just what I’ve said. The setting is designed specifically for people with disabilities, then it is going to be presumed isolating. Some examples of isolated settings are farmsteads or disabilityspecific communities, gated communities, residential schools and colocated and operationally related settings
or facilities which is what I just explained. That’s a bunch of specific services on one
site all to serve people with disability or people with disabilities in general. These are examples that CMS itself has given as potentially isolating settings. If a state does want an exemption to fund
a setting that falls under this category, it
is not only going to have to send a request to CMS, but it’s also going to have to go through a public comment period to allow people, stakeholders, and advocates the ability to comment on whether the setting is actually isolating. Now, why are we specifically talking about residential versus nonresidential settings? The reason is that they really make a distinction in the regulation. In particular, CMS offered a whole set of additional requirements for providerowned residential settings. That is a place like a group home or an apartment that’s owned by the same organization that provides the services to
the person with a disability. Those extra requirements were very detailed,
and CMS announced that it would issue guidance
on how to apply the requirements to nonresidential settings as well. But it hasn’t yet issued that guidance about nine months later. And it’s made clear that the regulations do apply to nonresidential settings. It is only these specific part of the regulations that’s just about providerowned residential settings. That, of course, doesn’t apply to nonresidential settings. But every part of the rest of the regulation does. And CMS has taken the position that states
should be able to figure out how to apply these general parts of the regulation to nonresidential settings. And even if it hasn’t come out with further guidance, this should be clear enough for states to be forming their transition
plans in the meantime. So a lot of people are really wondering, if it’s so clear, what should we
be taking away from it? An example of the kinds of settings that we’re talking about are adult day services also
known as adult daycare. Many of these services have historically been provided in segregated settings. So we’re going to really need to wonder how these new regulations are going
to apply to it. Right now, the regulations heavily disfavor segregation or any other isolated setting. It is likely that states will have to think about how they are providing adult day services. In fact, the Department of Justice has issued findings that these services are unduly segregated under Olmstead which is
an ADA case that says that states need to provide services in an integrated setting. So if something is violating Olmstead, it’s likely that it’s also violating the new home and communitybased services rule. And we’ll get to that a little bit more later. Other examples of nonresidential services
are habilitation services. These can include home based habilitation to help people gain skills in activities of daily living or it can involve day habilitation which is often centerbased. A bunch of people go to a center and they learn various life skills or engage in support groups and otherwise are sort of supposedly learning how to live independently. It can also include expanded habilitation services. This is where we get into employment services. It includes prevocational services, which are to prepare an individual and get people very general employment skills like following directions, attendance, how to complete a task, how to be safe in the workplace. And I’m sorry, someone has said that I’m cutting in and out. If people can hear me or cannot hear me, can you please� if you can’t hear me, can you please raise your hand. Maybe I should say, if you can hear me, please raise your hand. I’m worried that a lot of people won’t raise their hand just because they aren’t necessarily tuned in. I will try to remain on the line and avoid cutting in and out. If I keep cutting out, please just let me know. I hear a lot of people saying I’m fine. Great. So prevocational services, they tend� they are actually required to involve placements where a person is not paid more than 50% of minimum wage. So a lot of your traditional sheltered workshops which paid less than minimum wage, these are often going to be covered or are currently covered under prevocational services. So when we’re talking about whether sheltered workshops can be covered under home and communitybased services funding in the future, that’s the category
that we’re really talking about. Expanded habilitation services can also include educational services and supported employment services. Supported employment is when a person is� has a job, typically an integrated one
where they’ve got just a very normal job and they
are getting support in order to keep that job,
such as job coaching or help to get back and forth from the job, help with training that person while they’re on the job. Some states as I have already noted have said they are waiting on additional guidance from CMS on how to apply the new role to nonresidential settings. But CMS has said really don’t wait up on this. You should be able to apply the final rule to these nonresidential settings just based on the text of the rule. Well, how are we going to do that? We are going to apply the general requirements to nonresidential settings, including day programs. We’re going to go through sort of one by one
how are we going to implement these requirements. First, there’s the obvious one that all HCBS
has to offer people opportunities to seek employment and work in competitive integrated settings
to the same degree of access as people not receiving Medicaid home and communitybased services. So that means that people could theoretically
work in a rural setting. They could be getting services at home or in other settings where interaction might be limited for reasons other than disability. So if a person can work at home who doesn’t
have a disability, then the person with a disability could get services that help them work at
home, too. A person could work on a regular farm, and so a person with disability could also work
on a regular nondisabilityspecific farm as long
as they’re interacting with the community to
the same degree as nondisabled people who work on a farm. It is also important to note that even though a person isn’t required to seek employment under these regulations, there’s no part of
the regulation that means that you can’t have
the opportunity to seek employment or control
your personal resources in the future. So if you have a placement that’s not itself competitive, integrated employment, that placement still has to be offering an opportunity for competitive integrated employment. You can’t block off that option. When we talk about segregated habilitative programs these have a really bad track record of placing people in competitive integrated employment. So when we’re deciding whether or not a sheltered workshop is going to meet
these requirements, you’ve got to consider that. You’ve got to decide, well, if it has only
got 5% placement rate into competitive integrated employment, that’s not evidence that it is providing people real opportunities to go
to competitive integrated employment if they
decide that’s what they want. You also have to make sure that it’s providing people information and encouraging people
to go into competitive integrated employment. If a setting isn’t giving people the confidence
and sort of telling people, yes, you can go work
a job if you want to, people will support you
and we can help you find that job and it will
be okay. Then people aren’t really having the opportunity to seek competitive integrated employment because they’re not even aware
that that’s an option for them. We’ve also seen that nonresidential services, like residential services, need to offer the opportunity to control personal resources. That might include providing counseling and financial competency. It might include simply allowing a person to get their paycheck or get their benefits themselves instead of having to go through a thirdparty payor or intermediary. If a person needs benefit counseling in order to maintain their benefits while earning a paycheck, they might also need to do that. We also need to make sure that there’s a conflict of interest provision. If a person is� or an organization is providing a person with employment or day services, then they can’t really be running the person centered planning process unless there is some serious conflict of interest protections in there. And that, again, applies to sheltered workshop operators just like it applies to residential services providers. Informed choice. People need to not only have an informed choice but that informed choice needs to include nondisabilityspecific settings. And by nondisabilityspecific settings, I mean settings that are not just for people, disabilities like placement in an integrated competitive work environment or receiving
day services on a oneonone basis or in a setting that’s used by people without disabilities as well. It is not enough that the states have some nondisability specific settings on their roster. It needs to be� the state needs to offer nondisabilityspecific settings for that particular person. That person needs to have some nondisabilityspecific settings in their set of choices and in a way that meets their needs, right? You can’t just offer someone a nondisabilityspecific setting that you know won’t provide for some of their needs. That really has to be on there. Otherwise, the person does not have an informed choice. It is also important to note that informed choice is not everything. A person needs to have informed choice but that doesn’t mean that they can end up receiving services at a place that’s actually not integrated and have it be funded by home and community based services. Informed choice is one requirement. Integration is another requirement. They are both independent of each other. The final rule also includes specific standards that apply to providerowned or operated residential settings. As I said, these are just for residential settings. But you can look at them and sort of infer what will that mean
for a providerowned day or other nonresidential
setting. For example, recipients in a providerowned residential setting need to get� need to
have rights as tenants. They need to have a right to privacy. They need to have a right to control their own schedules and activities. They need for have a right to an accessible living environment. And, as I said, many providerowned settings,
like hospitals or nursing facilities, are automatically going to be presumed institutional, not HCBS. If you think about how that kind of� can
we imply� can we imagine some parallel standards for nonresidential settings, an example might
be the ability to set a person’s employment goals,
a right to an accessible workplace, including accommodations, protections by� from employment law such as the Fair Labor Standards Act and
the Family Medical Leave Act. These are� that could be an analogy to the requirement that people
have tenant protections. These standards, again, are supplements to
the other requirements that are general and don’t focus on nondisabilityspecific settings and nonresidential settings. We’ve seen already a few different state responses that address nonresidential settings. As I mentioned, some states have already said,
we are not even going to talk about this until
we receive guidance. CMS has told you, you can’t do that. But some states have already sort of said,
well, we’re going to go ahead and address nonresidential settings in our transition
plan. A good example is Tennessee which submitted
its transition plan on May�30th, 2014. It decided to take the new rule as an opportunity to create�
to sort of debut a program that it clearly had
been working on for a while before the regulation
came out. Their new program is employment and Community First CHOICES. As Tennessee announced, it will be geared towards promoting and supporting integrated, competitive employment and independent living as the first and preferred option for all people with intellectual and developmental disabilities. It will be operated as a managed longterm support services and supports program. So some managed care provider will take on this contract. This is as far as we know the first sort of combined employment first and housing first program that we’ve seen. Under the new program, consumers would be
able to choose from three models of service delivery ranging from consumer direction where a person manages their own support budget, all the
way through sort of basic managed longterm services and supports where it is the company that’s
sort of deciding which services the person needs
and will get. It’s going to be provide transition services
to use with disabilities under age 21 so that
they can transition to independent living and employment. And it will also offer employment supports to adults even if the adults aren’t
at the nursing facility level of care. That often gets used as a benchmark for whether or not
a person can get HCBS. It is going to target new HCBS recipients,
and then it is going to expand to existing recipients. And just as an aside, existing recipients have already been getting employment first services through a preexisting program. Now, I can’t really� I can’t really express whether or not the Tennessee program is well thought out or is going to be great in terms
of the details. They’ve just got this concept paper. But it is a great example of how it can be an opportunity to really rethink the way
that you provide services and change your default model for employment and day services. Another example is Wisconsin. Wisconsin really has some interesting interplay between the overall health and human services program
and a lot of their programs which are actually extremely innovative and very focused on employment first. Wisconsin relies pretty heavily on sheltered workshops to provide nonresidential services
to people with developmental and intellectual disabilities. And it submitted a letter to CMS basically taking the position that they really should only have to offer some integrated services and that as long as they have some integrated options, they can also offer sheltered workshops and have them covered by home and community based services program funding because that’s how they interpret it� the requirement
in the final rule, that people be able to exercise informed choice. CMS has already responded to the letter, though, and has reiterated that integration is a key component of the final
rule that a setting that is not integrated won’t
be covered by home and community based services program funding. They very carefully avoided saying in a blanket statement that any particular model is segregated because they want states to do that work on
their own before coming to CMS. They don’t want to be saying, you know, this is good, this is bad before they actually see the state plan. What we would expect in the future for Wisconsin is they’re going to have to come up with a
state plan. They are going to have to say whether or not they are going to cover sheltered workshops and justify whether or not they think that sheltered workshops comply with the rule. And then we’re going to see CMS approving or disapproving this transition plan based on
its interpretation of whether or not these particular sheltered workshops comply with the rule. That said, for reasons that I’ll get to later, I’m not going to� I’m not going to predict
that sheltered workshops are going to have an easy time complying with the rule. I’ll discuss that in just a second. The thing that we need to think about in deciding whether a nonresidential service complies
with the final rule is that the new CMS rules are meant to� the new home and community based services rules are meant to mirror the case
law in Olmstead. Olmstead was a case in 1999, the Supreme Court said that a state that provided services to people with disabilities in segregated settings and not in integrated settings was violating the Americans with Disabilities Act, that it was actually discrimination to segregate people based on disabilities in terms of the services and
where they get them. The terms of Olmstead settlements are going
to be very informative in deciding what kinds of nonresidential settings are integrated and
which kinds are not integrated. We know that CMS in issuing its final rule was trying to be consistent with Olmstead. It said so in its notice of final rulemaking. So when we look at recent Olmstead enforcement actions, we can see what kinds of settings
might be considered integrated and which kind are
not integrated. This is sort of a sidebyside comparison of Olmstead versus the final rule. Olmstead applies to all statefunded services, not just home
and communitybased services. So that’s one difference. But also in the home and community based services final rule, it doesn’t just
say that people need to be integrated but it has
a whole lot of more detailed discussion that
is sort of fleshing that out. DOJ has actually addressed nonresidential services in a bunch of recent lawsuits against various states over nonresidential Medicaid funded services. In the United�States versus Rhode�Island,
the Department of Justice took the position that sheltered workshops are isolating and states should instead offer supported employment
in integrated settings. And it obtained a consent decree that requires Rhode�Island to phase
out its sheltered workshops over the course of
about ten years and increase supported employment services. Similarly, in U.S. versus Virginia, the DOJ
got a consent decree requiring states to provide supported employment to people with intellectual and developmental disabilities. And in a pending case in Oregon, the Department of Justice
issued a findings letter saying segregated employment services violate the ADA. So if something violates the ADA, there is a pretty good chance that it is also going to be considered isolating under the final rule. And now I’ve actually gone through my slides
in record time. But I also see that there are a ton of questions. So I will open up to questions. First, whether or not we will have materials
I can email. Yes, materials will be sent out to all registrants at the end of the Webinar. Our second question was whether the new rules address the maximum amount of support a person can get in a vocational integrated setting. The answer is no. There are no maximums in the home and communitybased services rule. It is intended to serve as a floor. So I can say that at a minimum, a person needs to be getting the
support that they need in order to be integrated into
the community to the same extent as a person without� who doesn’t receive Medicaidfunded home and communitybased services. That is going to be dependent on exactly what kind of supports a person needs. If, for example, a person can use the public transit system independently, then they might not
be entitled to assistance getting to and from
work. But if a person can’t use the public transit system independently, then they might need transit to and from work to be covered as
one of the supports. They might need communication support. They might need job coaching. It really just depends on what a person needs
in order to actually achieve employment. Another person asked when we assume or presume that certain settings are isolating, are we
not short circuiting the participation of individuals and their families in making those determinations? And the answer is not� I don’t think so. Choice, as I said a couple of times, is really only one of the many requirements
for home and communitybased services. We could, for example, say that some people
in their families want the person to live in
an institution. But straightforwardly, institutional settings can’t be covered by
HCBS funding. They need to be covered by some other funding stream. And if a person chooses to live in an institutional setting and the state
wants to fund that type of setting, they have to�
they have to find another way of funding it. The goal of home and communitybased services funding is to really increase people’s substantive integration into the community. So HCBS funding is really going to be restricted
to placements that are actively integrated. Now, if a person and their family thinks that it’s wrong, that CMS has made the wrong decision in terms of whether a placement is actually integrated or not, let’s say CMS thinks, yeah, this is an isolated setting but the residents
in the setting are like, that’s ridiculous, we
feel completely integrated, we go wherever we want, we feel like this is just the same as independent living in my own apartment, they have the
option of making their voices heard through the public comment process. The final rule requires that states open their transition plans to public comment which means they have to, you know, say exactly which
kinds of settings they’re going to cover through
the home and communitybased services funding. And they’ve got to let the public� and that
includes people with disabilities and their families� comment on whether or not they think these decisions are reasonable before the transition plan actually gets sent to CMS. And we’re now discussing the sort of full transition plan
that� as opposed to the work plan. Many states have sent a transition plan to
CMS already. It is really sort of a work plan, a work plan how they are make these decisions rather a description of services. Those descriptions of services have not come out. As far as I know, no state has come out with
one. But when they start doing that, people with disabilities, their families and service providers will have an opportunity to comment and provide input on which services they find actually integrated and actually segregated. Now, it’s just a comment process. You know, people can’t override the rule necessarily
by saying, you know, that HCBS funding should
be available for something that obviously isn’t available for. But it’s a great way for people to be saying what their actually experience
is with the type of settings are. One person� another person has asked if
a person chooses not to participate in competitive employment, can they continue to choose a segregated day program while having home and community based services funding pay for that program? Now, the answer is not� if it’s an actually segregated day program, if it is
not providing community integration of any kind,
then home and communitybased services funding should not be available for that program. But the person should be able to choose an integrated nonworkday program. And by that I mean access to recreational activities, volunteering, assistance with visiting friends and family during the day, assistance with
going about one’s daily chores or daily business. Any sort of program that’s not work but also is
not segregated or isolating. People have the autonomy to sort of decide
what they want to do during the day. So we should see programs where a person is self directing
and deciding what they need assistance with during the day. So that will be funded through home and community based services. You won’t have to work, but it still has to meet basic integration requirements. Another person says: I have an adult child
with profound disabilities. Should I start looking for institutional settings? The answer is no. Home and community based services need to
be integrated but they still need to be adequate. So a person with profound disabilities who really� if you and the person with the disability decide that the work is not the
best option for them, they do have a right to,
again, integrated day services. And those might just be help caring for the person during the day. If they don’t want to leave the house during
the day, then they don’t have to. There’s no forced socialization requirement in here. Just as a person without a disability can decide not
to leave the house all day, a person with a disability can decide not to leave the house all day. The important thing is that the person have access to the supports they need in order
to leave the house if that’s consistent with
their needs and priorities. But if they need help during the day in order
to function and live and they don’t really want
to leave the house, they have a right to services
in the home during the day. The same person asks whether the ADA requires integration appropriate to the needs of the individual and how that interacts with categorical restrictions on services. And the answer is that the ADA, as we saw in the recent DOJ litigation, is really focused on integration� on making sure that everyone’s maximally integrated. The DOJ has basically come out with a position that anyone who can be in a segregated day services program can be in an integrated day services program. And they came to that decision based on countless years of research and innovative interventions that really help
people find competitive integrated employment with adequate support. Now, if a person is truly homebound and really can’t leave the house or is sick or can’t
leave� you know, can’t participate in sustained activity during the day, then they’re probably not supposed to be in a sheltered workshop to
begin with. They should be getting more intensive in-home support. But in general, anyone who can work in a segregated setting, can work in
an integrated setting. I’m just going through some more questions. The� one health has asked: How does the community rule affect adult training facilities that support people in a segregated setting
like a day program? And the answer is it really is� it affects every facility in which people
are getting home and community based services
funding. So if a person is getting training in a particular skill and they are getting that training for a significant number of hours
out of their day, then that training needs to
be delivered in an integrated setting. That can include a place where other people are without disabilities are getting jobrelated training, it could be at home, it could be in small
groups that are really focused on spending a lot
of time in the community as part of the training. It could be in a lot of places. It just needs to meet basic integration requirements. Another question says that� asks me to clarify how a provider can participate in the planning process. And I should clarify that a provider can’t lead or facilitate the personcentered planning process but they can theoretically participate in the planning process to the
extent that all providers are participating in order
to just sort of say these are things that we
offer. So a planning process could involve a person visiting a bunch of providers or talking to
a bunch of providers about the kinds of services they offer. And obviously, yes, absolutely, the provider can participate in the process to
that extent. It can be there saying, Here’s what we offer. But they shouldn’t be leading or facilitating the process and also offering services to be chosen through that process. That gives them a conflict of interest. Unless there is some sort of barrier that
makes sure that the person facilitating the process isn’t being given a financial incentive to
divert people into services chosen by their employer, then they really shouldn’t be involved. Another person asked, does a family or guardian’s choice of a nonintegrated setting overrule Olmstead requirement for the most integrated setting? And that’s kind of a complicated question. In general when the Department of Justice has settled Olmstead disputes, they
have included for a person to remain in an institutional or isolated setting if that’s what they choose or if that’s the choose of their guardian. At the same time, the DOJ has really required
a lot of outreach to both people and their guardians, if they have one, to make sure
that they really understand the integrated options available to them and really help them find
a place in the community. When we are talking about the home and community based services rule, though, that’s a different question. The home and community based services rule isn’t sort of saying what can be funded
at all or where a person can go, it’s saying
what kinds of services can get HCBS funding. And the rule, just by its own terms does not allow funding through HCBS of a segregated setting. Absolutely just straight out. You can’t get home and community based services in a setting that doesn’t offer access to the community
to the same extent that you would have for a
person without a disability. So while a family or guardian can still try
and choose a nonintegrated setting, if they can
find an alternative funding source for it, it’s
not going to be paid for through home and community based services. The reason is that home and communitybased services are a dedicated funding stream that is specifically earmarked for community based services. It is not for just whatever services individual people may decide that they want. It is specifically earmarked for a specific kind of services. So services that aren’t communitybased won’t be funded. One person who’s a provider has asked that
they currently have individuals living in one bedroom apartments of up to 15 units. They’re owned by the agency, and we’re assuming the people
don’t want to move to another apartment setting
or in with roommates. Do they have a choice to stay in their current apartment? Their answer is I’m not really sure based on the description whether or not it’s integrated. Because it is a provider owned residential setting, it is
going to have to� yeah, because it is a provider
owned residential setting, it is going to have to
meet a whole bunch of requirements that are sort
of discussed in greater depth in the CMS rule. Now, it’s possible that even if your apartments don’t meet the requirements of that rule right now, then it will be possible to bring them
into compliance of the new rule and allow people
to stay in the apartment. The other thing to remember is that the new
rule requires transition into compliance within
five years. So you have until around 2019 or 2020 actually, depending on when your state submits the transition plan, in order to bring these apartments into compliance with the new rule. So I think CMS is trying as hard as it can
to not uproot people. And as part of that, it’s giving a lot of time to come into compliance. Another question, which I find very interesting, is whether the new rules are going to result
in more people pursuing funding through local dollars rather than through the HCBS waiver. And will CMS be tracking that data? The answer is, you know, it’s been raised so just to rephrase the question, if a state wants to fund a particular service that doesn’t meet the new
rule as a result it can’t be funded through HCBS,
will it decide to use its local money to fund those placements? The answer is probably can do that as long as it is complying with Olmstead. Olmstead requires the state to provide services in integrated settings as well. They couldn’t drop their whole home and communitybased services waiver and only fund the segregated placements through local dollars, that might be a serious Olmstead violation. If it wants to keep less integrated options
open, it certainly could fund through local dollars. There’s some political concerns associated
with that. So, for example, a state might decide that it just doesn’t have room in its budget to be funding these placements through local dollars. It is not getting the federal financial participation that it normally gets from Medicaid through the Medicaid HCBS program. And if it is not getting that financial participation and it is not able to get the service funded through some other Medicaid program, then it might just decide that it’s cost prohibitive. I don’t know if CMS is actually going to be tracking this move. I think it’s probably something that statelevel advocates need to
pay attention to. And if it turns out that they’re seeing this in more than one state, we should probably get together an effort to track it a bit more. But I’m just not entirely sure given the cost associated with it, I’m not sure how many
states are going to choose that option. I’m just looking through a few questions. There are a few questions that I have already answered so I’m skipping past that. How are advocacy groups assuring that states are funding HCBS services adequately to meet these requirements? And the answer is there are a lot of different avenues that groups are using. The first resource that I’d really recommend to you, which unfortunately I forgot to put in the presentation, is the HCBSadvocacy.org. It is a Web site put together by a coalition of disability organizations to track not only state transition plans but also state level advocates’ responses to those plans and resources for advocates to use when responding to state transition plans. The other thing I would recommend is ASAN’s HCBS tool kit which you can find at www.autisticadvocacy.org/hcbs. There are a few ways as both of these resources discuss for statelevel advocates to really keep states accountable for their transition plans. One very important way is the notice and comment process. So the new rule requires states to open up
to notice and comment when they submit a transition plan. That means they’re going to publicize the transition plan. All people in the state can read it. And they can send in comments about specific providers, about their idea of what should be covered, about any issues they have with the transition plan. They can send those comments both to the state and also to CMS, so that CMS is aware of what people’s concerns are. We extremely, extremely encourage people to
be doing that. Largely because we know that providers are going to be using that comment process very extensively. We need to make sure that people with disabilities and their families are heard at least as much as the providers
are. It is really them who are going to be using these services every day and who are really going to suffer if the services aren’t sufficiently integrated. The other way that people can be using the
rule to advocate is just to educate more people
about what the rule means, give out information,
help people understand that they’re not� that
even as states are changing their model, everyone
is still going to have a right to services, you know, regardless of their level of disability. They are just going to be getting services ideally in a more integrated setting. Another person similarly asked: What about individuals with behaviors? Let’s say someone has a habit of, you know, yelling or acting
out when they’re in public and people are concerned about the person being in an integrated setting as a result of those behaviors. The rule really requires that the services be tailored to the person’s individual need. So a person with behaviors might need� you know, might
need behavioral interventions, might need supports that they need in order to avoid the behaviors. They might need someone to help them figure
out where they can get services that are both integrated and that aren’t likely to trigger their behaviors. For example, let’s say a person gets overwhelmed and starts having behaviors when they’re in
a crowded place. Well, the rule doesn’t require that a person be in a crowded place. It just requires that a person be integrated into the community. A lot of nondisabled people avoid crowds. So a lot of nondisabled people who want to avoid crowded places might instead go to the museum on off hours, might go to the park, might
stay at home a lot of the time, might go to support groups. The new rule would definitely allow a person to stay in places that are safe for
them and to have supports when getting into a stays where the behavior might be an issue. So they might find themselves going to support groups. They might find themselves spending a lot of time with family or with one-on-one support persons. One person asks: Does a setting differentiate between paid staff and the general public without disabilities? Absolutely. So when we’re deciding whether or not a person has access to the general community, it’s not enough to say, well, you know, the person
is living in a building with a bunch of other people who don’t have disabilities if every single person living in the building who doesn’t have a disability is paid staff. Paid staff are necessary. They’re important. But they don’t count as true integration for the purposes of the rule or for the purposes of Olmstead. If a person’s main access to people without disabilities is paid staff, they’re not in an integrated setting. That said, you know, if a person is in a rural setting or is choosing to work from home,
then they might naturally not be interacting with many people other than paid staff. And that’s okay. They just need to have the same level of access as a person without a disability. If a person without a disability working from home is not going to be interacting with a whole lot of people over the course of their day, that’s fine as well for a person with
a disability. We just don’t count the paid staff one way or the other. One person asked about transportation and
can we really require it for community events and recreation. The answer is it is going to really depend on the location of the person’s housing and the location and their ability
to use public transportation. If a person is living in a building where they can’t easily get anywhere and they also don’t have access to informal transportation supports, then
what I would argue is they’re not able to access
the community to the same extent as people without disabilities. People without disabilities who live in that setting might typically have
access to a car or have access to public transportation that’s not accessible to the individual with
a disability who’s living there. If the� if the state chooses to offer housing placements in areas that aren’t very walkable, aren’t very accessible, aren’t really giving
a person a way of independently getting from
point A to point B, then in order to show that the person has access to the community, they might need to supplement that placement with transportation. Another person has asked: What are the actual models for a person with serious disability related needs to get out into the community? And are we just saying that the person should choose to stay at home all day? No, we really are not saying that a person can choose to stay at home all day if they have significant access needs. And I want to make that very clear. A person might need to be at home all day if they are medically fragile or if they really just don’t like interacting with people and that’s a reflection of their preferences and not their access or service needs. So I want to make clear that that’s where
I was coming from when I was saying that a person
can choose to stay at home all day. If a person has significant support needs
and wants to go out into the community, we have
a lot of great models for them to access the community without being restricted to disability specific settings. So let’s say you’ve got a person who’s got very significant needs, they need help in order to get from point A to
point B at any time, right? They need significant mobility support. They need navigation assistance. They really can’t find their way around on their own without support. Right now a person with those needs might
be getting shuttled from their home to a day setting or be getting day services within
the context of a kind of a community where they’re getting residential and day settings in the same place and in a disability specific place. Well, to make that integrated, we could instead have a person� instead of going on a shuttle from their home to a segregated day setting, they could have assistance to go out into
the community and participate in activities, including socialization activities, that are consistent with what the person and their family really want and need. So this could include the person, you know, visiting friends, other people in the community that they have a relationship with. It could include them having assistance to go to the movies or go to the park or go to any other place that they really enjoy being. It could include assistance with gardening or hobbies that they really enjoy doing. And it can� by gardening, I mean, they could even just sort of have a person, take them
for a walk in a place where they get to sort of, like, interact however they want with their outside environment. It really depends on the person’s abilities
and interests. So it’s not going to be� it is not going to look the same for every person at
the same level of need. We have a lot of people who, you know, have very significant service needs, and they really like watching movies all day. They might want to go out and watch movies all day. We have other people who really like going
to parks. They might go to the park. It is really going to be responsive to the individual. Another person has asked: Can people� will
they remove the option for family members to be
paid staff, and how are think of the things we
are discussing affecting self directed services? The answer is I have not heard any rumors associated with the new rule that would remove the ability for family members to be paid
staff. We strongly support self direction. And the rule itself supports selfdirection. So if a person wants to self direct, they should be
able to do that. That should be part of what it means to be able to choose the services and supports you get through home and community based services. Familyprovided support where it’s available
and when a family member is actually available
to provide it can be incredibly useful to people and incredibly helpful when it comes to helping out people who have significant needs and
who have a very good relationship with their family member who can provide for those needs. So we’d strongly oppose any movement to disallow family members from acting as paid staff. Will states be able to receive federal funds for transportation? The answer is typically yes. Home and communitybased services waivers can include transportation. I know some of them don’t, but I believe that they often
do. And, finally, a person has asked: How do we ensure that individuals are not unduly influenced by providers or parents with low expectations? Especially if they have developmental or intellectual disabilities. The answer is really going to be found in the personcentered planning process and in the sort of substantive rules of the home and community based services regulations. The person centered planning process is supposed to involve not just parents but also case managers. And those case managers are really going to have to be educated about
what to expect from people. One thing that’s really useful about the new rule is that it’s really saying, look, we think that integration and competitive employment is a goal for everyone, even people with significant disabilities. Even people with intellectual disabilities. Everyone can do this with the appropriate
supports. When we are talking about, you know, making
sure that everyone has access to truly integrated services, one of the reasons why we strongly favor CMS’ decision to make sure that people
are in truly integrated environments is because
a lot of the time people are currently funneled
into segregated settings based on people’s assumption that they can’t handle an integrated setting. By saying that everyone needs an integrated setting, that’s really consistent with their needs. We’re basically saying those low expectations are, you know� it is time to
end that. It is time to basically start with the presumption that people can be integrated,
can work if they want to and, you know, let’s
just find a way to do it. I’m going to read out the next couple of questions and then I might end the Webinar
early because we just went through things very quickly. One person has asked: Are we going to be focusing on making sure that people get increased waiver funding, that they actually need in
order to get adequate services, especially people
with significant service needs? The answer is yes, but also in that really most cases, congregate settings including sheltered workshops are actually pretty expensive compared to integrated settings. So, for example, a person with very� even
with very significant service needs, if they can
be put in a supported employment placement, we
find that they end up needing job coaching and
all of these supports only for the first month or
couple months of their placement. Once they’ve been in that placement for a
while, their coworkers and other people around them
in the employment setting often find themselves stepping up and basically saying, look, we
can handle this. We can supervise this person just the same as we supervise all of our employees. And we don’t really need a job coach to be watching them every moment of the time that they’re in this setting. So a lot of people, once they’re in an integrated placement, they� it is actually a good deal
for the state. Now, this is not the case for there are exceptions to this. There are some people who have significantly� sufficiently intensive support needs that in their individual case,
it might cost the state more. But overall, the state is not necessarily going to have to allocate more funding in order to comply with the rule. For every person that costs more, there are going to be a lot of people who cost less. So they are really going to be saving money. We, of course, think that all states should
be increasing their funding for home and community based services, if for no other
reason because there is a huge waiting list and a
lot of people aren’t getting home and community based services at all in the first place. But we don’t anticipate that the final rule itself
is going to make these services cost more or
is going to result in people not being able to
get services because they cost too much. And the final question I’m going to read aloud before we end early is: Can a family provide a housing option where they fund a home in
a neighborhood setting and then the agency provides the staff to support a person in
the home? The answer is absolutely yes. The rule� the home and communitybased services rule
has a bunch of extra requirements for settings that are owned by the service providers. But a lot of residential settings are not owned by the service provider. People can live in their own home or in a home that’s owned by their family and get services in their own home. And that’s actually something that the new rule requires a person to be able to do. They need to be allowed to be getting residential services in a nondisabilityspecific setting. Nondisability-specific setting usually means a person’s own home or a place that’s not
own by the residential service provider. Thank you, everyone, for patiently listening
to our question and answer� extended question
and answer period. I hope that everyone found this educational and useful. Oh, I just got one more question in, and I’ll read it aloud. Oh, a couple more� one more question. Florida has a waiver CDC plus that allows for oneonone activity choice for severely impaired person but the funding is not sufficient for cover the time required to avoid the person sitting at home for the majority of time. That is definitely a problem. And we recognize that as a problem, but we don’t feel that problem
is caused by the new rule. We believe that the new rule should actually free up funds for people
to get more hours of oneonone time because states will be saving money on a lot of congregate settings. So we do believe that people should be advocating for more hours, absolutely. It’s simply that we don’t feel that the new rule
is causing that problem. So I hope that clarifies everything. Thank you, everyone, for tuning in. We will be sending out the slides at the end of the day today and the video and transcription of this Webinar should be available by the beginning
of next week. Please tune in next week, the 28th, at the same time for the next installment
in our series on Home and CommunityBased Services
rule. And I hope everyone has a great day. Byebye.

Reynold King

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