Webcast
KMCO Archives
Advocacy
for Children with Special Health Care Needs
Originally
broadcast July 28, 2000
Welcome
to our webcast on Advocating For Your Child With Special Health
Care Needs. This is another webcast in the series from the University
of Illinois Chicago School of Public Health Center For The Advancement
Of Distance Education project on Quality Community Managed Care
for Children With Special Health Care needs.
I'm Faye
Eldar and I'm your moderator today. I'm happy that you're with
us and we have two of the shining stars of advocacy in the state
of Illinois with us today to share their expertise. I'm really
looking forward to this discussion and from learning from RoseAnn
Slaght and Margaret Mathes. Rose lives in South Belloit in northern
Illinois and I'm going to ask her to introduce herself. She's
a parent of two young men with special health care needs. She
has four children and Peg is a retired employee from our Title
Five program in Illinois of the Division of Specialized Care
for Children. I met her a long time ago and I've always looked
up to her advocacy skills and dedication to families and I will
let each one of our participants introduce themselves and tell
us a little bit about their background and how they got involved
with advocacy and maybe even how each of us have met. Peg, would
you like to go first please?
A.
Of course. Thank you so much, Faye. I'm a nurse and I have been
a nurse for about 45 some years plus and I started my career
in working with children. then I went on to have children and
grandchildren and wound up my career in working with children
for which I am very very grateful. I've been very fortunate.
And I met Faye through mutual clients of a young woman who had
a child who had very special needs. And this client lived in
one of the housing projects in the city of Chicago with her
parents, and she was extremely young, very fragile and very
intimidated by the system, by her family and just by life itself.
And the last time I talked with her, I was just amazed at what
a growth had achieved in her happenstance. She's just, she's
really just matured in so very many ways and she has done so
much for this daughter of hers. She's come a very long way.
Q
And Rose?
A. Hi,
I'm delighted to be with you today. I'm the Mom of four children.
Two of them have disabilities and two do not. My oldest son,
Donnie, is 22 and Donnie is deaf-blind. He has seizure disorder
and some very challenging cognitive issues. The next son that
I have is 21 and Paul just graduated from high school. He is
deaf and has developmental delays. Then I have two typically
developing daughters who are just as challenging as my sons
are. Currently, I work with a grant project in the state of
Illinois that supports parents and professionals to get training
and technical assistance and to do a better job for families
of kids with disabilities. And I also work for the state of
Wisconsin at the Center for Blind and Visual Impairments. And
I work I work as a direct service provider with kids who are
there for the school.
Q. Well
thank you both very much. One of the first questions we'd like
our participants to address is exactly what is advocacy and
what does it mean to you? Peg?
A.
Advocacy to me means to do the very very best you can and achieving
whatever is the best for your child, particularly in this instance
of working with children with special needs.There's a big difference
between advocacy and being assertive and advocacy in being aggressive.
There's a big difference in being angry about your situation
and eventually learning to accept your situation and moving
on.
Q.
And Rose, can you tell us about what advocacy means to you as
a parent?
A.
Advocacy means to me speaking for those who can't. And I don't
mean just physically can't. I mean those who are unable to understand
a system or maybe are still struggling to keep all the pieces
together. And I think we see that in a lot of families as they
begin the journey to the acceptance of their child's disability
and learning more about it. And those parents especially have
a need for someone to help them with their advocacy skills so
they learn how to to do the right thing.
Q.
Well said, Rose. Very well said. And I think we find out when
we become parents of children with special needs that this is
a new job that we have to take on to become an advocate for
our children and to encounter all kinds of concerns and agencies
and organizations that we had never thought about before and
we didn't know we'd have to do this. You know we're really focusing
on advocacy as related to health care and for our audience,
let me explain that when we say children with special health
care needs, this term means children with all disabilities and
all chronic illnesses. So it's very broad. It does not just
mean children who might have a specific medical condition and
I know that this is a new term and that is something else we
have had to learn about the new language for dealing with the
system and the jargon. Now Rose, can you tell us about some
advocacy experience you had starting out related to the health
care system for your sons?
A.
In the beginning for my son who is a biological child, the health
care system was just daunting. I was a teenage parent. I didn't
know very much about anything, certainly not about insurance
or medical cards or any of those concerns. Finding providers
who were willing to talk to me was a challenge and it still
is because a lot of providers don't understand deaf-blindness
which is happens to be my son's disability. And so that was
always a very hard thing to do and maintaining a good relationship
with those providers who often move on or often will not continue
with your child as they grow older. For my other son, Paul,
it was just a very hard thing to get him a medical card, even
though he was a foster child. It took a lot of visits to the
public aid office and back and forth just to get him what he
needed.
Q. And
what was most helpful to you in learning how to negotiate with
them?
A.
I think other parents were most helpful to me. They gave me
tips and advice and sometimes it's not what you do when you're
approaching the problem, but how you do it and how you talk
to people And I think parents gave me the best advice as far
as you know what questions to ask and when to be assertive and
when to not be.
Q. How
did you meet these parents, Rose?
A.
Through like support groups, through opportunities such as going
to conferences and workshops. I think that's where I met my
best information givers.
Q. Well
I certainly can agree with you as a parent. I always feel that
I get my best information from other parents and also, of course,
we've been fortunate you know to meet some professionals who
are really knowledgeable and will share information. Peg, can
you give us an example of working with the family on advocacy
about a child's health care?
A.
One of the biggest things that I advocate for with my families
when I first become involved with them is to be sure to get
a notebook, a large notebook with a pencil or a pen or whatever
works for them and to write everything down. To include in that
notebook a calendar, a large calendar, so that they can keep
note on what they did on what date and their feelings as well,
and to look back at this in a year's time and see what they've
achieved. I understand how much Rose has gone through and I
have not done it myself. It's it's the very beginning to find
out what's wrong with your child absolutely. It takes often
two people to hear what a physician is saying and to stop that
physician and say you know I didn't understand what you said.
Could you repeat it or I don't know what that word means. Could
you help me? Particularly, in many cases when we need an interpreter
available, it's it's tough to stop some of our professional
people when they know the situation real well and they're rambling
on very rapidly and you're sitting there and this is the first
time you've heard some of these words and you have no idea what
they mean or no idea what impact they'll have on your life and
on your child's life. So those are a few of the things that
I encourage families to do. To find someone that will go with
them and to keep written records themselves and to also ask
for reports as they go along.
Q.
Well I think you've shared some really good pointers with us
and also stressed some of the important issues of communication
between families and medical providers and I'd like you to talk
a little bit about how this is advocacy. A lot of people think
that advocacy is something negative or they don't want to get
involved in it or it has something to do with going to court,
but really what you're explaining to us is advocacy is something
basic about learning the ropes, being organized and keeping
records and having a positive attitude trying to be on top of
everything. Rose, could you tell us a little more about that
and about why some people think advocacy is negative, but it's
really a routine you have to build into your daily life?
A.
Well I think just like you said. People get the idea that advocacy
is a negative thing because usually when they meet someone who
is acting as an advocate for someone else, it's in the situation
like a school setting where it becomes the advocate is standing
with the parent to do the right thing to follow the law and
etc and maybe other people haven't seen it that way. The advocate
often says things and does things with the parent that the parent
may not be that comfortable in saying or doing themselves. And
so people maybe take that as a threat when when in fact they
shouldn't. Advocacy is is like I said before is speaking for
those who can't. But advocacy is just doing the right thing
and I don't know why that would be so scary for people.
Q. And
what kinds of skills do you think parents need to develop in
order to be good advocates?
A. Well
I think parents need training and I think they need some guidance
because it's very easy to become aggressive instead of assertive
and I think that we need to teach people the difference and
how to do things in a more positive kind of way where everybody
wins. And usually when when advocacy hasn't worked, well it's
because someone interprets it differently and they might get
a little aggressive or they might get a little out of line,
but a true advocate is somebody that knows how to be assertive
and when to be assertive and I think that if we train parents
and help them along on their road, because like you said earlier,
it's a it's a learning process. You don't have all these skills
when you first start out. Quite often you didn't anticipate
having a child with disabilities so you certainly didn't take
those classes in high school or college. So it's just part of
the learning process and advocacy is a good thing; it's not
a negative thing.
Q. Well
thanks Rose and Peg, could you tell us about a specific example
when you worked with a family about advocacy related to their
health insurance for the child.
A.
I had to explain what words meant like appeal and processing
through an insurance person at work, explaining to the parents
that it was necessary for them to go to their insurance person
and then from that insurance person to go to the next person
in line. The way of going up the steps of the ladder which is
what we do with everything we do. To keep on working at it,
it takes a lot of persistence. And it's not very easy for many
of our families because many of the families that I was involved
with had a specific job to do. Perhaps they were working in
a factory or in a food staff area where they were very very
busy and if they had ten minutes, they really didn't want to
spend that ten minutes in trying to get to the insurance person
at the place of employment. So they'd have to take off time
from work. It was very very difficult for them and there were
times when it was necessary for me to contact the insurance
person and to work with them and eventually sort out the pieces.
Sometimes it meant that it it took a visit to go to the place
of employment. And again, when they find a professional or a
mentor to help them with this type of thing because the language
is very different in insurance work.
Q.
I think you've touched on a number of important points and it
can be really complicated. It can take a lot of time. You need
to make a lot of phone calls and we know that lots of people
in their work place cannot make or receive phone calls unless
it's an emergency and it makes it even more complicated
A.
Correct. I find that when you have a child that has special
needs particularly, you have to make more phone calls than the
norm. But irregardless, however many children you have, I think
that you have to just be very persistent. You have to remain
constant. You have to understand that you have expectations
of these people whoever they are and and perhaps your expectations
are not going to be met. But if you keep at it, eventually it
will happen. It takes a while. I remember working with one particular
person in a hospital setting and it was an insurance person
and I explained to them that they had never given this family
some of the information that they should have had about other
services such as Social Security or Division of Specialized
Care for Children. Eventually they did drop the charges for
the child, but it took a year. And once both the people in the
insurance office understood what was going on and the parents
understood what was going on, the bills were resolved. But it
did take a long time.
Q
Well again from your vast experience, you've pointed out some
really important things and I think all of us have had these
experiences except we're not prepared for them.
A.
Correct.
Q.
When it happens to us and may not know what to do or where to
go. Now Rose, could you tell us about some resources that exist
that help families with advocacy and how people can find out
about resources.
A. Well
every state has the parent training and information centers
which receive federal funding. In our state, I believe we have
six of them and they're scattered around. There's one in Chicago
and then there's a state-wide family ties group and they're
accessible by 800 numbers. Most school districts also have that
information about family support type of entities that are out
there willing to help families. Also just in your own community.
I mean finding a parent who's willing to listen to you and go
to the PTA or PTO to conference with you when you do need to
ask questions. I also encourage families if if you're not sure
about things in schools, start attending school board meetings.
I mean it really begins locally. You have local resources in
your community and that's where you need to start. Because often,
state-wide groups are wonderful but they concentrate on a very
large area and maybe not specific to your needs and your area.
Right now, we're having some issues with transportation for
my son who's just transitioning out of high school and it's
taking a lot of local people to help me put it together.
Q.
Now Rose, I understand that you met with the mayor of your town
last week. Could you tell us a little bit more about that?
A. Well
this was part of the transportation issue and instead of the
people that are suppose to provide the service weren't exactly
seeing what I needed from them. So instead of having a problem
with them, I decided well the the best way to handle the situation
is to get involve those people that make the financial decisions
about the transportation.
Q.
Well thank you for sharing with that with us. I think it's important
for us to know and get examples of ways people have been successful
with advocacy and also to keep in mind that we need to start
at the bottom not at the top to try to resolve things on the
local level before going up the chain of appeal to higher and
higher levels. Now I'd like to talk a little bit about any government
programs that may help families with advocacy and the the names
of the programs. We will have all this information posted on
the resource section of our website for the reference of everyone
who's listening to the webcast so you'll be able to find what
is available in your state by going to our resource section,
but I'm thinking about programs like protection of advocacy,
centers for independent living, client assistance programs.
What are these programs and who do they help? Peg?
A.
I would suggest a social worker and whatever hospital they are
receiving their services at, and ask what's available locally.
And then start with the 1-800 numbers and figuring out what
would be the best for them. But to take their time, not to hurry
because sometimes we have parents that have ten agencies working
with them and it gets very confusing. They don't quite know
which which road to take. So my suggestion is always to to hear
about all of this but to step back and look at what would be
the best for you. And to do that again with one person that
will help guide them on this on this very adventurous road.
Q And
Rose, would you like to comment on this also?
A.
I would say that every community has a service coordination
entity and I think that a a very helpful place for families
to start too. I know that I've used my service coordination
agency a lot and I hadn't used them for quite a wile when my
kids were in school because we had different issues, but now
with transitioning into adult services, I've kind of been using
them again. So find out who your service coordination agency
in your area is. Also United Cerebral Palsy, The ARC. Alll those
kind of supportive family and professional agencies have have
different things going on in the community. Quite often, they'll
sponsor parents to go get more training or make make it possible
for them to attend a state-wide conference which is a really
good thing for parents to do.
A.
Very well said, Rose. And again to go back to something that
you had said originally, you learn so much from other families.
And to learn how to communicate, to allow people into your home
which is a very private home but to let them know what you got
to work with and then to go onward from there. It has to be
done through general communication in this way and in workshops
and in seminars. Many physicians do not know a lot of the services
that are available. Parents have to learn to educate them and
let them know what's going on so that they can in turn pass
it on to the next set of parents.
Q.
I hear the motive of what you are both saying is ask questions,
be assertive, look around, have dreams, find out who can help
you and I want to focus now on families who are just starting
out who will need advocacy assistance. We will also have on
our resource section a link to all of the Title Five programs
in every state for children with special health care needs and
they also have toll-free numbers in every state, a place where
families can call up families. They really don't know where
to go to get information and do not get from a doctor to start
with their local public library, to call or ask the librarian
are there any resources in the community for children with special
needs and I always tell people when you call up someplace and
they say they can't help you, ask if they can refer you to somebody
else. I'd like both of you now to think about just when you're
just starting out. How do you find out about things and how
do you get linked up? I know it can get really complicated and
I know Peg mentioned about the notebook. We all need to have
those because we fill them up very fast.
A.
Well I think in Illinois we've tried to set up a system that
catches kids in early intervention years and early childhood
and that's through our Child and Family Connections. Starnet
is also a resource for families and professionals of children
with disabilities, birth through eight. And we're a grant funded
by the state board of education. We have an 800 number and we've
done things like try to reach out to parents in different ways.
We put together a parent resource listing of every family who
wanted to be included in the state.
Q.
And Peg, what advice do you have for the families who are just
starting out and need to get the very basic information about
advocacy?
A. I'm
involved with a young couple right now who have just started
beginning to understand that their child is autistic. They're
slowly going through the acceptance phase. I have given them
three phone numbers and I keep in contact with the three people
whose phone numbers I've given them and they have not yet reached
out and that's okay. I see this woman on a weekly basis and
I'm very encouraging to her. She is still going through the
diagnosis phase and I'm letting her walk the steps herself,
but I'm there if she needs to if she needs information. I'm
her information source. People are not going to just rush into
something unless they're being pushed and sometimes that's just
not the best way.
A.
I would also add to that Faye that I think there's five things
that that parents can do right away and the first thing is to
have a positive attitude, cause I think a bad attitude is the
worst disability that anyone can have. Very well said. So you
have to have a positive attitude. You have to give yourself
processing time and quite often you know we want people to rush.
Just like Peg said, we want people to rush through things or
speed it up a little, come on. But we have to give people processing
time and parents have to give themselves time to process all
this information. The third thing would be have a team mentality.
You're a team player. You might be the captain of the team if
you're the parent, but you're still one person on your team.
The fourth thing would be creative thinking. Think outside the
box. I mean sometimes things the easiest answer is just the
most the least complicated. So be a creative thinker. And number
five would be a problem solver because quite often we see a
problem as that's the end when, in fact, it's just a temporary
challenge. So you know look to solve problems, not to create
more.
Q. Rose,
this is wonderful advice. We are going to put this up on our
resource section for Rose Slat's guidelines for Advocacy. This
is really important and that sort of leads us into the next
question that I have for you. Often when we think, advocacy
people think oh you have to get a lawyer. Are lawyers needed?
How do you know when they are needed and how do you go about
dealing with this?
A.
Lawyers are needed sometimes with due process and trying to
get your child into an educational setting. . There are certainly
particular people that are geared towards this and that are
trained towards this. And there are people who will help the
parent assess this this legal access and it's not a frightening
happening, although many parents as soon as they hear lawyer,
they do get frightened. But it's really not a frightening aspect.
Some of the folks that I worked with needed a lawyer because
of legal access to medical systems because of citizenship difficulties.
And that also was done really very easily once they accepted
the fact that it was okay to have a lawyer talk with them.
A.
I would say litigation always kind of frightens me too as Peg
had just said and I would only use litigation if all other means
fail. And I would first go to mediation. But I think if you
can't get anywhere through mediation, then sometimes you are
forced to litigation. But I certainly as a parent never never
ever wanted to go that route just for the plain and simple fact
that it's very expensive and very stressful on a family who
is already totally under stress if they're to that point.
Q.
Correct.
A.
And I can think back on some times when I have talked with families
who said you know I want to get a lawyer to help me advocate
for this service for my child and in talking to them I said
have you talked to the teacher or have you talked directly to
the doctor who made the decision and I was surprised to find
out that in many cases they had never talked to the people who
were involved in the direct daily care of the child or in you
know in the the child's medical care that they saw in the office.
They never told them that they were not happy with the decision
for the treatment plan.
A. So it
goes back to what Rose said with her five points of action.
Have a positive action positive attitude. don't immediately
negate what someone said and say oh I'm going to get a lawyer
involved in this and give it some processing time and and think
of it as a team you know think of again like I said have a few
people listen to what's being said. Don't sometimes because
we're perhaps a little bit nervous or a little bit naive or
a little bit frightened, for whatever reason, we don't hear
all the words that are being said. And problem solving can start
at the bottom not at the top. Go at it slowly.
Q.
Well thank you. This is something really important for all of
us to remember every day and to reinforce. Another thing I want
to ask about is types of advocacy assistance that have income
eligibility requirements and how to work with that.
In my area
we have a group of lawyers, Prairie State Legal, and they're
suppose to help people with lower incomes you know advocate
for their children legally. They are lawyers and there are a
couple other entities in the state that receive money to help
people with lower income levels with legal things.
Q.
And while we're talking about income assistance, another thing
that I remind people that there are the legal services agencies
across the country to help low income people. There are other
types of legal clinics sometimes at law schools. Sometimes when
you explain the situation to an attorney, you will be able to
get a discount or a payment schedule. I always advise people
to apply and fill out the application for programs that have
income eligibility. Even if they don't think they'll be eligible,
they need to find out and sometimes if you're denied from one
program, a social worker or social service agency may be available
for to refer you to other charitable funds that could help you
and nobody will take word of mouth anymore. Well I just can't
afford to pay for it. They want you to apply and to see what
exactly the financial situation is and advocacy organizations
and parent organizations can share information about more and
more resources. It's sort of like a chain I guess.
A.
And you do that by going to the very first place that somebody
tells you to go to or to call them. As you said in the very
beginning Faye, who who can you refer me to? If you cannot help
me, who can you refer me to? And if Northwestern has a full
load, they may refer you to us Kent School of Law. They may
refer you to Loyola. All three of those law schools I know have
have assistance. But you may have to fill out a few forms. And
it may take a little time
Q.
Now one more part of advocacy that we haven't talked about yet
is self-advocacy and about parents teaching their children self-advocacy
skills and I like to say this starts when our children are really
little and we let them choose whether they want to drink apple
juice or orange juice. I'd like to get your thoughts on self-advocacy.
I had a
wonderful parent who now lives in Texas and every once in a
while that young man still will call me. When he was in grammar
school, his father started letting him take charge of when his
appointments would be, what was going on in school that day
and what would be a good day for the appointment. And he would
ask him this when it came time to make the medical appointment
for his next visit. And that boy eventually learned how to order
his supplies, needed monthly supplies. He eventually learned
how to order his own transportation and they had a very long
talk about guardianship and about what type of education he
should pursue after high school and he was like you said, apple
and orange juice, this young man was involved with his care
on a day by day learning process. This young man now works for
a government resource in Texas and he lives on his own and he's
probably about 26 years old and doing well. He has a wonderful
life
A.
Oh that's wonderful. The family recognized his need and started
really early.
A. Yes.
And the simple things were built on them.
A.Yes.
And I would agree with Peg that it's all about choices, and
you too Faye, I mean we have to start out with the simple choices
giving people a say in their life and their future and then
recognizing that communication and respecting it. And it's hard,
especially when we know that children make mistakes and children
don't always choose the correct choice but I think that that
respecting those choices and giving choices is key to helping
somebody become their own best advocate as they grow older.
A lot of family groups are now including young adults in decision-making
and I think we need to encourage family groups to let more young
people with disabilities have a say in how their organization
is run.
Q.
Well it's almost time for us to finish the webcast. Now do you
either of you have some closing comments and thoughts about
the advocacy topic for families who have children with special
health care needs? I know you both have so much knowledge and
we could probably talk for three hours about all of your experiences.
A. And
I would say that families advocacy is a good thing. Families
need the support. The support doesn't change. Especially as
your kids grow older you think things get easier and they don't.
You're always proving that your kids have a disability. that's
to insurance, to Social Security, to any service provider out
there and that doesn't change. You're always justifying needed
services and it's not that we're asking for extra dessert. And
I think a lot of people think you know because you have a child
with a disability, you want something extra. Look we just want
what you have automatically.
Q.
Well said Rose
A
And we're always looking for funding for needed personnel and
trying to find time to train people. So this is why families
need advocacy. Because a lot of other families whose kids are
typically developing don't have those same issues. And they're
not out seeking funding or finding trained personnel and justifying
their need for services so this is why we need advocacy.
A.
Absolutely and also letting parents know that there are funds
available. It's not easy to access. But much of it is attainable
by parents like yourself who are willing to go to Springfield
to go to the representatives that will help us attain more funding
for the needs.Those are the realities and so we need to keep
on helping people go forth go for that last dollar.
Well I
think you have both done an excellent job of summarizing our
advocacy topic and pointed out the progress that has been made
in the past 25 30 50 years through advocacy efforts of concerned
families and concerned professionals and community members working
together in all areas of life for people with disabilities and
special needs; creating services where none existed before and
looking to the future for unmet needs. Advocacy is part of our
lives. We need to know we are not alone. There are many people
out there willing to be our partners and we need to move ahead
and again I want to thank very much our advocacy experts Rose
Slaght and Peg Mathes for sharing their expertise and wisdom
with us today
This concludes
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Center for the Advancement of Distance Education. All of the
programs are about important topics related to children with
special health care needs and managed care health insurance.
