MONDAY, APRIL 19, 2010
VCU WEBCAST - PEATC 

Transcript provided by: Caption First, Inc.
    						**** 
    >> KATHY HEALEY:  Hi and welcome.  Thanks for being here today 
with us.   I am Kathy Healey with the Parent Educational Advocacy 
Training Center Next Steps transition training program.
    We are here at VCU, RTC in partnership, thanks to funding 
from the U.S. Department of Education Rehabilitation Services 
Administration.
    We have been working with families for more than 30 years at 
PEATC, talking to them about issues related to special 
education, general education and all things related to how 
families can be good support systems for their children with 
disabilities.
    Today we are focusing our information around the transition 
of students from high school.  We know that students need lead 
time.  Families need some lead time.
    So we want to convey lots of information to families that 
will be helpful.  We invite you to visit our Web site 
www.PEATC.org where you will find a complete listing of the 
webinars to date.  And to professionals we are offering CEUs or 
C.R.C.s for this program.  Parents, if you are interested we 
will issue you a parent training certificate as well.
    If you are a parent internal Virginia and would like to talk 
about some of the issues that you hear today and in other 
programs, we invite you to call us at 800-869-6782 or locally 
(703)923-0010.
    At the end of the presentation we would invite you to fill 
out an evaluation and/or stay tuned for a Web board discussion 
where you will have access to the presenter.  And the presenter 
is willing and able to be respond to any inquiries that you 
might have.
    As parents, we have lots of conversations on a daily basis 
with other parents.  And as a matter of fact, we have lots of 
conversations with professionals in the field.  We are 
sometimes loved by professionals and at other times we seem to 
be the root of many problems.
    But as a parent of a young person with a disability, it is a 
life long obligation.  Not one that I particularly chose, but 
it just kind of happened.  And this is what I hear from other 
parents as well.  We are in it for the long haul.  We don't 
always do it right, but we want to be good partners.
    
    >> ANN TURNBULL:  I am delighted to have the chance to be 
with you.  I want to say, Kathy, what respective for the PEATC 
program, for the work that you and Sherry and your colleagues 
do from a national perspective.  We all look to PEATC for 
leadership and I very much appreciate the many, many 
contributions that you have made.  In terms of this 
presentation being done in conjunction with Virginia 
Commonwealth, I also want to acknowledge my good friends Paul 
Wehman and Fred Orlove and say what a pleasure it is for me to 
be part of a project that is sponsored both by PEATC and VCU.  
Thank you for inviting me.
    I'm very happy today to have a chance to talk with you about 
one of my favorite topics, which is the role of parents as 
partners in supported employment, especially for students with 
high support needs.
    And putting together this presentation, I thought perhaps we 
might play a game together.  Make it a little interesting.  And 
that game is going to be myth or reality?  In terms of parent 
roles.
    I want you to very actively think about your own opinions as 
we go through this presentation.
    First let me provide a few definitions.  Supported 
employment means competitive work for competitive wages with 
training and support by a skilled job coach with intermittent 
ongoing supports for as long as the individual is employed.
    Also supported employment is not implemented according to 
the criteria in that definition and that is very important for 
us to consider.
    The second definition is individuals with high support 
needs.  By this phrase I'm referring to students who require 
intensive and pervasive supports across all environments in 
order to participate in their communities and in order to make 
contributions to others.
    IDEA uses the terms students with severe and multiple 
disabilities for this group of students.
    Some students with autism, classic autism have high support 
needs as well as students with intellectual disabilities.
    Now, what is the current employment status of students with 
high support needs?  Is there a problem here?  Do we need to 
really concentrate on doing a better job?  Well, with these 
statistics, we do need to do a better job.  Only about 
one-fifth of adults with very or somewhat severe disabilities 
work either full or part-time.  These data came from a survey 
by the national council a disability.  And also adults with 
severe disabilities are three times more likely than people 
without disabilities to have annual incomes of 15,000 or below.  
We see from these data that there's a problem that needs to be 
addressed.
    Now, for my presentation and how we are going to address 
this problem, I'm going to explore four statements pertaining 
to parents in terms of whether the statement is a myth or a 
reality.  And then I'm going to highlight and document 
important directions for establishing trusting partnerships 
with parents in supporting individuals with high support needs 
to be successful in supported employment.
    Now, the first statement that I want you to think about, I'm 
asking you a question here.  Myth or reality?
    Parents favor sheltered workshops in the name of safety for 
their son or daughter.
    Do you think that is a myth or a reality?  I want to tell 
you now about my son Jay Turnbull, who had a very interesting 
employment experience over his lifetime that provides some 
insight on this statement about sheltered workshops.
    I dedicate this presentation to Jay.  Jay very sadly died 
about a year ago very suddenly, totally out of the blue when he 
was at the top of his game.
    This picture was taken at his 40th birthday party.  Music is 
his passion.  You are seeing him on the stage.  If you had seen 
the audience, it was about 150 of his friends and family 
gathered to celebrate.  It was a very happy occasion.
    Jay when he was in high school was slated for a sheltered 
workshop by the educate ors that work with him.  This is about 
20 years ago.  It was right at the beginning of supported 
employment when my husband Rod and I talked with the educators 
about supported employment that we were hearing about and 
reading about happening in other parts of the country and why 
that might -- why Jay should go to a sheltered workshop, if it 
might be possible for him to go to supported employment.  I 
remember the teacher said to us that we were just showing 
favoritism to Jay because he was the most significantly 
disabled student in the class, the secondary class.  And it 
would not be fair for him to go to supported employment if all 
of the people who were more capable were going to the sheltered 
workshop.
    We said to the teacher, actually, we don't want to have any 
favoritism.  We would love to see all of the students going to 
supported employment.  That was just the model.  That was the 
model not used at that time.
    We were told as parents that we were being unrealistic and 
that we were not accepting that Jay's disability by thinking 
that he could do something other than a sheltered workshop.
    Well, Jay went into the sheltered workshop with us not 
liking the idea, but committed to trying to convince the agency 
to do supported employment and before Rod and I could have the 
time and make the progress -- I don't know if we ever could 
have made the progress to change the agency at that time, but 
Jay was very, very unhappy in the sheltered workshop and in the 
group home that he transitioned to.
    All the students in our community routinely transitioned to.
    Jay did not have the communication at that time to really 
express his feelings, but he did have the behavior and through 
his aggressive behavior, unfortunately directed to one person 
in the workshop and group home who happened to be the son of a 
state legislator, Jay was very quickly expelled from that 
setting, with the notion told to us that he was not capable 
enough to be in a sheltered workshop; that he needed a more 
restrictive setting.
    Well, someone at the time told us no matter how far down the 
wrong road you go, if it's the wrong road, turn around.
    We kept thinking:  What could we do?  Rod and I committed 
ourselves at that time to start a small program in our 
community to that would provide supported employment and 
supported living to adults with disability.
    When we told the person from the sheltered workshop who was 
expelling Jay that we were going to do that, his question to us 
was:  What will you do when you fail?  Do you know how scary it 
is for parents to hear a question like that?  You might be 
surprised hearing me now, but I was really speechless, 
absolutely speechless when he asked that because we were so 
afraid and we were so worried about Jay.
    My husband said we are not going to fail; we are going to 
succeed.  And that's not a threat, it's a promise.
    And that promise really came true in Jay's life and it was 
because of our advocacy and the advocacy of his friends that he 
was able to have a supported job at the university where we 
work because of networks and friends of ours who were committed 
to Jay.  That's an asset that many families can bring to you is 
their own networks that can, that are committed to their child 
with a disability and that can open the door of employment.
    Jay worked as a supported employee at the University of 
Kansas for 19 years.  He did a wonderful job.  He made more 
money in a week than he would make in several months at the 
sheltered workshop.  And guess what?  There was rarely ever any 
hitting or choking and when there was, there were very 
complicated and complex circumstances associated with that.
    For the most part, in and out of every day Jay absolutely 
succeeded magnificently in his supported employment after being 
expelled for being too disabled for the sheltered workshop.
    This is a picture of Jay receiving his first paycheck.  The 
woman to his left is Jean Ann summers, one of our very dear 
friends who first employed him at the University of Kansas.
    I wanted to show this picture, too.  This man, Ed sum rip pa 
has just retired.  He was the associate director of 
administration for the unit that the Beach Center reports to.  
Ed was our friend and very quickly became Jay's friend.
    Ed always had Jay's back and always had an eye on Jay's 
wellbeing and became such a dear friend of Jay's, as Jay went 
on his mail run and always went by Ed's office.
    I say this because there is such potential in the friends 
and the networks of parents in providing support for their sons 
and daughters in employment.
    But is this available for every work setting for everyone?  
No, this is not available for everyone.  What else is an 
option?  I want you to meet Ryan Gray.  Ryan's mother Martha 
knew about Jay's employment.  She very much wanted Ryan, who 
was experiencing Down's syndrome, to have an opportunity for 
employment after he had been fired from three or four jobs in 
the community because of inappropriate behavior.
    Martha heard about a grant from the State developmental 
disabilities council, wrote that grant, got $25,000 used that 
money to buy vending machines.
    That was about, gosh, eight years ago.  Ryan started out 
with, I believe, maybe four vending machines and now he has 
about ten or 11.  He has a very successful business that was 
initiated by his parents.  Ryan really loves uniforms.  One of 
the things they did from the outset was to create a uniform 
with his own logo that he and his job coach wear, that makes 
him feel like a million dollars when he goes around the 
community doing his work.
    Well, is that a unique situation?  Is Ryan and Martha, are 
they the only ones that can have a situation like this?  
Another person in our community is Bea Scott.  Bea's mother, 
Soni, heard about Ryan's business.  She went to a conference 
where Wendy Parent, who graduated with her Ph.D. from Virginia 
Commonwealth University and now is at the University of Kansas, 
a fabulous, fabulous employment specialist.
    l was giving a presentation and giving a lot of examples of 
success stories about people with disabilities working in 
supported employment in programs already set up and also 
starting their own business.  Bea was in the sheltered 
workshop.  Bea's mother said gosh, Bea could do something like 
that and Soni and with her motivation and initiative and with 
Wendy's help went to the employment network in our community 
and they developed a business plan and now Bea has her very own 
laundry business that provides services to hair stylists in our 
community.
    Now, let's come back to the question:  Myth or reality?  
Parents favor sheltered workshops in the name of safety for 
their son or daughter?
    The answer to that is myth.  I hope you know that.  Let's go 
on to look at another statement, myth or reality:  Parents 
prefer for their son or daughter to be unemployed so that they 
can keep SSI for themselves and health benefits for their son 
or daughter.
    You decide, is that a myth or reality?  Let me provide some 
information.
    There is a major void of accurate knowledge for parents on 
benefits.  Many parents fear that SSI is the only thing and 
that if they lose SSI and they get a job and they are fired as 
Ryan was four times, then what's going to happen then?  They 
will go back to the bottom of the list, is how many families 
think about it.
    I remember hearing one time the Tarzan principle.  The 
Tarzan principle being, don't jump one -- being don't drop one 
vine until you grab another.
    Many parents are worried about SSI.  Also, many families are 
recipients of low expectations from the time their child is 
born.  Often I hear:  Oh, families don't have high expectations 
for their children.  Well, I think raising Jay, I don't think 
anyone ever asked him as a child what he wanted to be when he 
grew up.  We might be out with friends and that question would 
be directed to our two daughters, but no one would ask Jay 
that, because they didn't think he could do anything.  They 
didn't want to hurt his feelings.
    Many families by the time their children get to be 18 or 20 
have experienced almost two decades of hearing what their 
children can't do.  They have limited access to the stories 
like Jay Turnbull's and Ryan's and Bea's and the hundreds of 
other stories that Wendy Parent and others tell so that they 
believe that work is possible.
    Families generally want their children to be productive, to 
have self-esteem, and to make more money than SSI pays.  And 
it's for that very reason that families need to know about the 
Social Security Administration's, what is called the WIPA 
program.  The acronym WIPA stands for Work Incentives Planning 
and Assistance.
    And every transition program in the country at the secondary 
level, families should be learning about the WIPA program 
because it provides benefit planning.  It helps families know 
how their child can go to work and also receive benefits that 
they need to get them set up successfully in a job and it helps 
families be in touch with advocacy services that can help their 
son or daughter keep a job.
    The last bullet on this overhead is a link to a directory of 
the offices in each state for the WIPA program.  If families 
were put in touch with WIPA and if families were, would be in 
touch with the success stories, they would really get their 
dreams to come true about their son or daughter in terms of 
employment options.
    So let's return to the statement, myth or reality?  Parents 
prefer for their son or daughter to be unemployed so that they 
can keep SSI and keep health benefits.  Do they really prefer 
it?  Or are they doing that because that's the only option that 
they know?  Myth or reality?  I say myth.
    Parents prefer the best possible employment for their child 
with the benefits that support them to be successful.
    Third, myth or reality?  Parents can easily access 
information on evidence-based practices related to employment.  
So if they can access information easily, why don't they know 
success stories?  Well, the research on supported employment is 
published in journals and journals have copyright restrictions.
    It's an issue that really bothers me in my core that public 
money, tax payers' money that is used to conduct research to 
find solutions for individuals with very challenging 
circumstances to be employed cannot be released to the 
practitioners or families who really need it unless they pay 
again a second time for the journal.
    And most families don't even know the journals exist.  And 
the journals are not written in language that practitioners and 
families can easily access.
    Well, you say let families Google.  Google will find it for 
them.
    I did Google disability and employment and I got over 
9 million hits.  Now, what family member has time to sift 
through 9 million hits in order to find the pearl in that 
oyster?
    And then if you narrow it down, research on supported 
employment, you get over a million hits.  I'm reminded of the 
phrase that I heard someone say that trying to find the answer 
to a question, a specific question like parents need to know 
about employment is like trying to get a sip of water from a 
fire hydrant.  Our job as a field is to take the fire hydrant 
and just as this illustration portrays, to identify the best 
available knowledge and to make it available in practical ways 
and to enable families to get a cup of information that they 
need when they need it and just how much that they need rather 
than sifting through the 9 million hits.
    I was reading a very recent research synthesis on the 
predictors of post school outcomes.  This research synthesis 
was published in December of 2009.  So it's just come out.  In 
one of the CDC journals.  The study did an excellent job of 
finding the best available studies and sifting through to get 
that cup of water.
    And this is some of the findings from that study.  Of the 21 
studies that were analyzed, only one focused on students with 
high support needs.
    So first of all, there's the tremendous need for more 
research in this area.  Secondly, across all types of 
disability, the most powerful predictors of success and post 
school outcomes including employment were that the student had 
been included in general education during their elementary and 
secondary school.  That the student had paid employment and 
work experience during school.  That the student had self care 
and independent living skills and that the student received 
support in finding a job from family and friends.
    Well, it looks to me that those four things can be 
tremendously supported by parents.  Parents are ones who were 
at the IEP conferences, the transition planning conferences.  
They can help make possible throughout the years that students 
be included; that students have support from their family and 
friends for real work experiences during high school, and that 
students have independent living skills.
    So myth or reality?  Parents can easily access information 
on evidence-based practices related to supported employment?  
What is the answer?  Myth!  Our job is to make it easier for 
families to access that information by putting information 
together that they can get at their fingertips.
    Now, let's go on to the last statement.  Myth or reality?  
Parents do not support the employment preferences of their 
children.
    Have you ever heard if you get the parents involved there 
will be conflict because the person with a disability is going 
to want one thing and the parents are going to go for something 
else.
    Remember Jay?  Jay told us that he did not want to be in the 
sheltered workshop, but he did not know the job opportunities 
that were possible.  We knew Jay's preferences and we knew that 
a job in an air conditioned building that did not require him 
to get dirty and smudgy during the day, that had friendly 
people, that would provide a regular routine, and that had a 
number of jobs that he could do as a clerical aide was the type 
of job that he wanted.  In fact, I do remember when we were 
asking Jay:  Well, Jay, what kind of job do you want?  And he 
said wear coat and tie.  And we said well, at the university 
the chancellor is the only one who wears a coat and tie.  And 
his job is not available.  And now we have a female chancellor 
and the coat and tie would be even out for the female 
chancellor.
    But Jay, I think, in saying that he wanted a coat and tie 
was really saying that he wanted a place of dignity.  Remember 
Ryan?  Who had the vending machine business?  How did that come 
about?  Well, that came about because there was what we called 
a group action planning team.  A group of family, friends and 
professionals surrounding Ryan, meeting on a weekly basis to 
try to figure out what would be a good match for him and we all 
started thinking about what are his preferences?  We all had a 
sheet like this and we all had the task of writing down 
preferences of Ryan's and then thinking:  Well, given those 
preferences, what would the job possibilities be?
    Well, now look at what the preferences were for Ryan.  He 
loves to eat.  He likes uniforms.  He likes variety.  He likes 
to be independent.  He wants to be on the go.  He is very 
social.  He's a morning person.  He enjoys physical activity.
    What job?  That's how the job of the vending machines came 
up.  Because it matched his preferences.
    Yes, his parents were the movers and shakers behind the 
whole concept of building a job tied to Ryan's preferences.
    Let's look at Bea.  Remember Bea?  I was thinking I have a 
picture of Bea here, but I don't.  Let me recall Bea for you.
    Bea's mother went to a conference; heard about a business of 
your own and thought about how much Bea enjoys doing the lawn 
di at her own home, her own laundry and her family's laundry 
and how interested she is in hair and in places in the 
community that deal with hair.
    That was the perfect job to do a laundry service for hair 
stylist.
    So there are many examples of families supporting the 
preferences of their son or daughter.
    Let's look at research.  What does research tell us about 
this?  There was a study that did what is called a repeated 
measure assessment of students with high support needs.  They 
would show them someone engaging in a job and they would be 
asked if that was something they were interested in doing.  
After they went all the way through all of the jobs that were 
presented, then they would be presented two jobs on the screen 
at the same time and would be asked which one of these would 
you most like to do?
    And through using that assessment, they found the top three 
priorities for each student.
    Then in this research study they asked adult proxies -- 
parents, teachers, residential staff and vocational staff, 
which of the jobs they thought would be the top three 
preferences.
    Now, another part of the game.  Guess -- I want you to guess 
the results in terms of the alignment between the students' 
preferences and others.
    The results are the proxies did not accurately predict the 
top three choices.  But you know what?  Teachers, vocational 
staff and residential staff were no more accurate than parents.  
The fact of the matter is, all of these people needed guidance 
and needed to learn how to really think through and pay 
attention to the preferences of the individuals with high 
support needs.
    The best strategy that we ever came up with in our family, 
and I know it worked so well for Ryan as well, is what we 
called group action planning.  A kind of person-centered 
planning.  But rather than person-centered planning that often 
comes together once a year and does planning, group action 
planning, our teams would meet every month and it was the job 
of are everyone in the group to come up with ideas but also be 
part of the solution of implementing the ideas.
    This is one of Jay's group.  I remember in one of the group 
meetings the real challenge that people were talking about was 
his transportation to work.  One of his house mates thought he 
should learn to ride the city bus.
    I was really scared that if he rode the city bus that he 
might, if he was very upset at some point, it wouldn't happen 
often, but it might happen that he would hit or choke someone.
    Sometimes just hitting and choking once is enough to be 
charged with an assault.  People often talk about the dignity 
of risk, but it's not very dignifying to be the person who has 
committed an assault because often with Jay not really 
understanding the nature of his aggressive behavior.  But what 
happened in that meeting was that people such as Wendy Parent 
in this picture and the house mates and others really helped us 
come up with solutions for the bus and they were part of the 
program to teach Jay.  What a lot of families don't like is a 
lot of people coming up with ideas and sending them home to 
figure out the implementation.
    So group action planning with employment specialists is a 
wonderful thing that really enables families and others, other 
adults in the person's life to see the full possibilities.
    Well, now we've gone through.
    Well, now we come back to say myth or reality?  Parents do 
not support the employment preferences of their children.  The 
answer to that is myth.  Families do support the preferences, 
but they need support themselves.
    As we think about these myths, I want to ask you:  What can 
we do, you and I and others who care so much about this topic, 
individually and collectively, to enhance the quantity and the 
quality of trusting partnerships among parents, individuals 
with high support needs, and professionals in meeting 
employment goals?
    I want to share with you a new project that we have at the 
Beach Center at the University of Kansas with my husband, Rod, 
we have gotten a grant from the Kansas Medicaid buy-in 
infrastructure change project.  It is called working healthy.  
Working in partnership with Wendy Parent, who is a fabulous 
employment specialist, is committed to the following key 
training principles.  Focusing on parents around our state.  We 
are focusing on the principles that everyone with a disability 
can work with the appropriate support.  That everyone can have 
a job that is enjoyable and satisfying, just as Jay and Ryan's 
and Bea's job is that way.
    Listen to this last one.  Everyone with a disability will 
always make more money working than by relying on public 
benefits.  Those are the principles that we will be focusing 
on.  Our goals are to increase families' great expectations and 
awareness of employment possibilities and to teach families how 
to access Kansas' employment-related resources, including 
working with the benefits specialist.
    We will help families develop advocacy and problem solving 
skills.  And we will also develop a train the trainer model in 
partnership with families together, our state's parent training 
and information center and the staff and families together will 
use the training model are in their trainings with families.
    This training model will also be available to others around 
the country.  We will be happy to share this.  The content will 
be employment policy related to rights and public benefits; the 
best available research, and a cupful at a time so the parents 
can get the essence of what they need to know without doing all 
the Google searching.
    The best experience-based knowledge on practices, strategies 
and resources from parents such as Martha, Ryan's mother and 
Soni, Bea's mother.  People who have been down this road and 
can share their success with others.
    We will also focus on many success stories of individuals 
with all types of disabilities and all types of situations with 
different preferences.  So a broad smorgasbord of success 
stories that people can learn from and we will focus on problem 
solving and advocacy skills so that when problems come up, and 
often they do, families working with their sons and daughters 
will have the problem solving and advocacy skills to address 
those problems.
    Our vision is a One-Stop Web site linking families to the 
best available resources.  Is not just a One-Stop Web site for 
Kansas, but a One-Stop Web site for the country.  So families 
know that they can go one place and that Web site is the portal 
to the best available information that is boiled down into its 
bottom line essence so that they can get the information as 
time efficient as possible.
    We would love to see an online community of practice filled 
with success stories and with problem solving ideas where 
families can talk with even other.  Where vocational providers, 
job coaches, secondary teachers, transition coordinators can 
access the best available information and help each other bust 
the myths, help each other find the solutions.
    And on that Web site we think it would be great to share 
document such as Ryan and Bea's business plan.  Training 
protocols that they needed to do their jobs.  Past plans.  
There is no reason for every individual to have to create it 
themselves.  We can share documents and help each other have 
the best possible employment outcomes.
    So in closing, I say to you please be a myth buster.  Don't 
Dis parents.  Don't make parents the victim.  Parents can be 
one of your most valuable and trusting partners by focusing on 
strengths.
    And finally, advocate for employment first.  Jay never 
should have had to go to a sheltered workshop before he had a 
chance for supported employment.  We need to recognize that all 
students with high support needs should have paid employment 
during school and should graduate to supported employment jobs 
so that their employment success is ensured as much as possible 
from the outset.

Thank you.

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