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Tonight we will spend some time thinking about different aspects of community living including
where someone might live, what kind of work they might do, and what they might do with
their time when they're not working. So again, let's think about who are partners in this
conversation about community living. So, up until now young adults, in most cases, have
been living with family members or extended family members and many of us are looking,
as we look to the future, are thinking about where that young adult as they get older and
as their parents get older might live and what they might do with their time. So, if
school has been a very structured and nurturing environment and it can sometimes be pretty
terrifying for families to think about what comes next. And thinking about that has to
do with many things, including what that young adults interests are, what the family's capacity
is to continue to support them as well as let them go. What kind of formal supports
might be available, are there waiting lists of 10 or 12 years for residential supports
or are there supports available now that can help that young adult think about where they
might want to live? So, again, this is a conversation that can start when young adults are still
in high school. And, clearly the family and the young adult are at the center of that
conversation. Aging and Disability Resource Centers are a really good resource to begin
to think about what kinds of supports might be available depending on what that young
person's and family's goals and interests are and next steps. We've talked about Family
Care and Partnership as two long term support programs. They include what are called residential
supports and we're going to talk a little bit more about what those might look like.
And then often this is a time where the county service coordinator, if a child is enrolled
in the Children's Waivers, might be quite involved in helping families understand what
might be on the other side of children's supports and the children's system. Independent living
centers are a really good resource. Independent living centers are often staffed by adults
with disabilities or youth with disabilities and are places where families and young adults
can find peers and role models for people with disabilities and what living in the community
looks like and what working in the community looks like. There are a network of 11 independent
living centers around the state and if you Google that, you can find the nearest independent
living center to you and ask if they might, for example, be able to connect your young
adult or you as a family member with someone who has a similar disability to get a picture
of what that might look like. And then we've talked about some of these other resources
as well. The conversation often with formal supports might begin with a question about
what kinds of outcomes are you looking for. So, and families who have participated in
the children's waivers may also have had a chance to participate in conversations that
are less about what services do you want and really much more focused on what are your
goals, what are your outcomes? I think that outcomes thinking can also be very helpful
as you move into the planning process with IEPs. So, for example, we become a little
bit less concerned with the minutiae of skill acquisition and really want to start thinking,
"when my child or young adult walks out the door of this school, what are some of the
most important things?" So I shared the example of communication with you. That was one of
the answers when I asked that question about my own son. He has got to be able to communicate
or he's incredibly vulnerable. And how will he ever participate in a work environment
if he has no form of communication? So, I sort of stopped worrying about some of the
little stuff and started focusing on these really bigger questions about what outcomes
are important in his life and how did we start thinking about supports to get there rather
than specifically how much, for example, physical therapy does he need three times a week or
whatever and what is that little goal? It's really a time to start thinking about these
big outcomes that we're looking for that lead to meaningful lives of participation and connection
within communities. So outcomes thinking can be very helpful to begin to use at this time
and to use it as you think about, as we said, employment, where and with whom to live, and
what kinds of other things, leisure, recreation, education might be important in that young
person's life. So, let's talk a little bit about employment. As I said, session 3 will
focus almost exclusively on employment. So, the purpose here is to share some of the language
of the world of employment as it relates to people with disabilities and what some of
the concepts are. As you start thinking about employment you're going to hear different
terminology. There are two, sort of, broad types of employment that are supported by
our long term support system. One is called integrated and competitive employment. And
what this means is someone is working where other people in the community might work and
earning wages similar to what other people in their community might be earning. It doesn't
mean that the wages are high but, they are competitive wages. So, at least minimum wage.
The other type of employment that our long term support system supports and that some
school districts utilize is called sheltered employment. And some of the terms associated
with that are that students would go to what's called a work center, work with a community
rehab provider. Oftentimes, they are based in one location. So, the person would go to
that location. They might not be earning a competitive wage but, what is called a sub-minimum
wage and might be doing work that does or doesn't reflect their interests. Oftentimes,
sheltered employment focuses on what are called pre-vocational services that help the individual
acquire skills that they would need in an integrated employment setting. Sheltered employment
should be time limited and there should be a plan that helps that person achieve the
skills and move toward community based, integrated employment. Within integrated employment,
some of the terminology you'll hear is this idea of competitive employment. So a young
adult, for example, might need some level of support initially to find a job and be
successful in that setting as they learn some of the skills. But then supports might be
able to be pulled back and they might be able to be more independent in that setting without
intensive supports. They also might be able to get supports from people who work in that
setting to help them, for example, get set up for the day or find out what they should
be doing. So they would be participating in a competitive employment setting with some
degree of support that could change over time depending on their skills. There's also something
called supported employment and this allows an individual to assist the person with a
disability on an ongoing basis in that employment setting. So, for example, if that person has
a significant need for physical supports or significant need for personal cares or other
types of medical supports in that work setting then someone who provides supported employment
services can do that. Those also can be intensive and pull back over time or they can remain
at a fairly high level of support depending what that individual's needs are. And then
individuals can work in typical employment settings. They can also be self-employed.
There are a variety of vehicles to support self-employment and I think one of the questions
that was mentioned was around micro-boards (micro-enterprises) and in session 3 we're
going to spend more time talking about some of the different ways in which individuals
can be supported who want to be self-employed. That would include something like micro-boards
(micro-enterprises). What's important to know is that you don't have to decide I want integrated
employment or sheltered employment. And you don't have to decide if the individual is
going to be working full or part-time. All of these things can be integrated together
so that if there are some very specific skills that might be supported with pre-vocational
services, those can be provided and, at the same time, that young adult can be working
in some community based settings and exploring those as well. So I think one of the most
important things to be thinking about when you think about employment, is to, as much
as possible, tie that exploration to what the young adult's interests are. And I'll
give you another quick example. My son wanted to initially be a pilot - he has very significant
physical disability. First he wanted to be a pilot then, he wanted to work on the tarmac
at an airport doing mechanical things with airplanes. And so instead of - we didn't say,
"no, you can't do that", we said, "let's explore what kinds of things people who work at airports
do". And we eventually settled on information technology - so some type of computer support.
Which ended up he was fine with. So we kind of took the nugget of interest that he had
related to airports and explored it in a way that he now has a student internship working
at an airport. Obviously doing something that also matches his skills and abilities. So,
working on the tarmac refueling airplanes just wasn't feasible for someone who uses
a wheelchair. They wouldn't let him do it and he couldn't. So anyway, that's a way to
sort of find the nuggets of interest and then see what kinds of careers or employment opportunities
might fit that nugget of interest. So as you being to think about employment, and here
I would say the term integrated employment has become increasingly a preference within
our long term support system. So, Wisconsin is in the middle of this, sort of, major shift
in expectations around employment for people with disabilities and I would say school districts
are also in the middle of that shift. So, as you think about who can support a discussion
around supported employment, certainly the school is important but there are other people
you can bring into that discussion. DVR is critical because DVR will help think about
what kind of supports they can provide. And then if Family Care, the adult long term support
system, is available, Family Care and DVR together are important partners in funding
a plan related to employment. Some of the experts that you might want to bring into
the discussion are people who can help find employers who might be willing to employ that
person with a disability. Many of our communities don't have a lot of experience employing people
with disabilities so a job developer is someone who can get out there talk to employers. Think
about is there a part of this job the person can do called job carving and help create
some of those opportunities. Job coaches help support that individual in the work setting
to acquire some of the skills that they might need. And then, who might be able to provide
some of the personal assistance needed. It could be someone who already works in that
environment or that setting. It might not have to be someone who comes from the long
term support system, for example. And then within all of this, are conversations about
how flexible can the services that are needed be? And, it may be that the services that
are needed - and supports - are flexible enough to Family Care, but there's also something
called self-directed services, which allows greater flexibility in customizing the kinds
of supports and individual might need. Something else to be aware of, and I know as a parent
this was not something immediately evident to me, is that people with disabilities can
earn income without losing public benefits. So this is a really important conversation
to have. There are what are called Disability Benefits Specialists who can help someone
understand the interaction between earned income to employment and public benefits.
Some of the - in addition to the Disability Benefits Specialists are what are called Employment
Benefits Specialists. So if you contact the Aging and Disability Resource Center in your
county, they can help connect you to an Employment Benefits Specialist. And then
through Social Security, there's something called Ticket to Work and a number of different
work incentive strategies that protect access to public benefits and, in most cases, we're
talking about Medicaid. People need health insurance. And they need the comprehensive
health insurance that comes with Medicaid. We don't want that to be a barrier to employment
or, in a sense, to a life of poverty. So the two - there are now many things in place that
allow people with disabilities to work, earn income and maintain access to the health care
that they need. So, ask questions about how to get more information about these things.
So let's talk a little bit about what community living looks like. Young adults are living
with their families up until a certain age and then what happens next? So, many of our
kids may live with their peers in their communities. They may get an apartment, share rent, share
housing. They may live in another community. They may live in your neighborhood, down the
road. So, find out what kind of living situation your young adult is interested in and what
vision they have for what they might be doing. Would they be interested in living with somebody
else, are they thinking about living alone and what that might look like? There are a
variety of supports for thinking about paying for where someone lives. So, part of the SSI
benefit can go towards housing -- what's called room and board. Part of that check can go
toward paying for rent. If one, two or three young adults live together, which is not at
all atypical for kids of that age, then they are pooling their resources to pay rent. Find
out if they want a roommate or if they want to live alone. And if that young adult has
- if there's not an ability for that young adult to move out then, are there other family
members at some point in time that they might want to be living with or that you, as parents,
would envision them living with and explore what that looks like. So, I've certainly heard
parents say, "I can't imagine my child ever not living with me" and in some cases - and
certainly part of that is cultural, part of it is what that family's culture and history
is and part of it is economics and also what we can envision for the future for our kids
without us. But certainly, it's an important discussion to have and something to think
about. Certainly as parents, we aren't going to be around forever. So, no matter when this
happens, it will likely happen at some point and so we want to be thinking about what it
looks like and understand also what might work for our young adults. There are different
kinds of living situations so you may have heard of group homes. More and more, similar
to the movement around integrated employment, is this movement around - called supported
living and it really thinks about, what are the ways in which the person with a disability
can live in the community with the greatest degree of choice and control over their lives
in ways that other people in their community live and are together? So, someone might live
in a facility such as a nursing home where lots of other people with similar needs live.
But, more and more there's an expectation that people can live in their own apartments,
in their own homes, with roommates and with supports that they need. So, for example,
if someone is living in their own apartment, you can hire an agency that might come in
and provide support to that individual on an ongoing basis. That individual may have
a roommate who is paid to provide some of the supports as well as individuals who come
in. So the living arrangements can look all different kinds of ways depending on what
that individual's needs are. But more and more, we want to be asking the question, how
do we normalize that as much as possible? How can it be as community based and as integrated
as everybody else who lives in the community and expect that our former long term support
systems will be able to respond to that question in a way that reflects full connection to
the community. Other questions to be asking are, what are the informal or natural supports
that also might be needed to support that individual to help them live within the community?
So, if there are roommates living together, are there things that each provides for the
others that might help them be more successful living in the community? And those may be
unpaid supports. So how do you find a match that begins to put together community living
in a way that that person can be supported in the most integrated way possible? And last,
we want to talk a little bit about community participation. So, we've talked about work,
we've talked about where and with whom someone would live, what else are they going to do
with their time? And some of this goes back to the beginning of our discussion tonight
where we talked about envisioning the future and knowing what that person's hopes and dreams
are. So, are there other things that they would like to be doing with their time? Not everybody
can find a full time job. Not everybody can tolerate a full time job. So what other kinds
of things might they being doing? Are they interested in volunteering at the library
or the hospital or the local day care? Many, many people find it rewarding and get a lot
back from giving to the community. So, finding ways to do that - are there community organizations,
clubs, interest groups that they might want to be part of? Think about things that they like to
do for fun. Also think about health. So, for example, is exercise important? Might they
join a local health club or Y(MCA) in order to get access to something they like to do like swimming
or working out or music while exercising or any of those kinds of things. Are there other
types of community interests? And then how to foster friendships and social connections
and I think this can be one of the hardest things to do, particularly if, as family members,
you've been critical social connectors. So, begin to think about, are there other ways
of supports for those social connections that can come from the community at large? And
always be thinking about the role of natural supports. So, for example, if there is a local
travel group that meets once a month to share their travel experiences, might someone from
that group be willing to pick up the individual with a disability and provide transportation
to and from that event rather than formal supports to do that? And then I think something
for family members to always be thinking about and wrestling with is what's our tolerance for
risk? There's always risk as our young adults start to move away from the nurture and support
of the family into the community. And our typically developing kids are always pushing
back at us to seek out those opportunities with their peers and in our communities. Our
kids with disabilities don't always have the chance to do that and we, as parents, don't
always have the chance to experience it. So, our tolerance for risk may be different because
our kids haven't been successful in those opportunities in the same way that our typically
developing kids are. So I think just recognizing that this is a factor in our comfort zone
with letting some of these things happen and delegating some of these things to other people
and thinking about it and understanding what we're worried about and, at least to the extent
possible, addressing some of those worries. So, again, we have resources that may be helpful
in thinking about all of these things.