>>Dr. Myra Rosen Reynoso: My name is Myra Rosen Reynoso, and I'm Senior Research
Associate at the Institute for Community Inclusion at University of Massachusetts,
Boston.
I'm also here because I am funded through the Maternal and Child Health Center to
run the National Center for Ease of Use of Community-Based Services for children with
special health care needs.
The goal of our institution at the Institute for Community Inclusion is to
make certain that individuals with disabilities and special health care needs
are included in all aspects of life.
That includes work, education, and community life.
And we also try to make certain that all individuals across the life span are
included in all aspects of life as appropriate.
In running the National Center for Ease of Use of Community Based Services, we have
really focused on what are some of the issues for children with special
health care needs and, in particular, a variety of different sub-populations.
We do a large focus on what are some of the disparities for black and Latino
children with special health care needs.
And what was very exciting about this conference was to see,
what could we learn from military children with special health care needs and their
systems of care?
And we don't think that what we are learning would be unidirectional;
we think it would be bidirectional.
We think that we can learn from each other at this conference.
Yes, I definitely have certain ideas about the future of research on this topic.
I think that there should be a shared research agenda.
I think that we have excellent data on the civilian children with special health care
needs.
And within those data sets, we have some data on military children;
we just can't pull it out.
So we're not quite certain.
We can't say something very meaningful about that group.
And so I think that, even in preparing for this conference over the past few months
and talking with some of the researchers that are presenting on the military data,
we've learned so much.
And I think we'd like to find a way that it's not just the few of us who have
attended, but to really kind of open up the dialogue nationwide.
Well, I've been blessed to be working with children with special health care needs and
disabilities for many years now.
And each and every one of them has been memorable.
Some I've been able to find out what they've been able to do with their lives,
how they've been able transition successfully into an adult life.
But I'd say the one that really sticks out the most for me is actually a family
member that doesn't live in this country that has a special health care need and, as
a teenager, became quite ill.
And in large part, that is why I am in this field, and I've been able to see the
differences and compare the systems that are available, both formal and informal, in
this country and others.
And that's just enriched the work that I do.
So I do this work for the family and for the kids.
Well, I think in today's conference, there's been a lot of resources that have
been provided in particular for military families.
I also think that what's been great about this conference has been that there are a
lot of different federal partners who are here, like folks from the Maternal and
Child Health Bureau, researchers like myself from Boston,
and pediatricians.
And I think that there is a wealth of information out there.
One of the first ones that I always think of with parents is Family Voices, because
there's one in every state.
And I think looking at the resources that some of the families that spoke today
about, and Dr. Beth Ellen Davis, I think will be key.
Well, for parents in general, I would say, be optimistic.
And don't be afraid to hope for your child, and don't be afraid to let your child try
things that, I think, for a parent who has a child with a special health care need,
feels extra scary to let them try to succeed.
And I say this in particular because I think of a lot of the families that I work
with that have a child that, well youth, that is about to transition to college and
all the fears that these families go through --
what if they don't get in?
Or, what if they don't succeed in the first semester?
And so I think in general, be optimistic, be happy,
and that's usually what I would say.
The advice that I have for clinicians is, regardless of what your first impression
is of a family when they walk through that door, that you listen.
And that you listen carefully.
And then if you can't understand them, get a translator.
And get help so that you -- make certain that you are listening, because really, the
parents know the most about their child and want the best for their child.
And I say this also because I work with a lot of families that are from diverse
backgrounds and are non-English-speaking.
And I think one of the most important things in being able to partner with a
pediatrician in your child's care is to be able to communicate.
Well, the advice that I have for members of the community, having just come from the
conference presentation and thinking about what Linda Homburg mentioned, that we need
to be as inclusive as possible.
All of us, if we live long enough, may have a special health care need or
disability.
And we're not any different, and our children aren't any different.
And so being as inclusive as possible and recognizing that everybody is truly a
blessing, and we have a lot to learn from each other, is the advice I would give.
So, being a part of the working group and being a part of this conference has really
been a wonderful experience.
It has informed the work that I do in terms of working with civilian children,
but it has also opened up a whole new area of interest for me.
And a lot of the work that I do is looking at disparities,
heath disparities for children with special health care needs.
And looking at the paradigm that we used to examine that and now questioning: Is
this the right way of looking at it for military children with special health care
needs?
And realizing that there's so much that we could do, not just in terms of figuring how
to join some of our wonderful data resources, but some of our wonderful parent
resources and how everybody can be incredibly supportive of each other.
And so I am truly grateful to have been invited to be a part of this experience.