FAMILIES AS ADVOCATES
BEING A HEALTH ADVOCATE FOR YOUR CHILD WITH SPECIAL HEALTH CARE NEEDS
Parenting a child with special health care needs is not easy. The
30,000 members of Family Voices, most of us parents of kids with disabilities
or chronic conditions, want you to know you’re not alone on this amazing
journey. We’re there, too. And we know that the sooner we parents become
knowledgeable and strong advocates for our children, the smoother life
becomes for our entire family. Our advocacy tips focus on health issues,
because that is the mission of Family Voices. But you can use these ideas
at your child’s preschool, child care center, classroom, in the community,
and with your extended family and neighbors. In a later Family Voices,
we’ll describe how to advocate for other children by improving public and
private health systems serving youngsters with special needs. We begin,
however, with one child.
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Believe with all your heart that your child, like all children, is wonderful
--- even when she or he gobbles up so much of your time and energy. Tell
all the world about this precious gift! Remember, though, that your child
with special health care needs is not the heart of your family,
but a part of your family, sage advice from veteran mom, Florene
Poyadue.
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As soon as possible, make contact with another family who also has a child
with special needs. Hearing from another parent who never sleeps, feels
inadequate, and is also frightened about the future will change your life.
We know it’s not easy to talk with a stranger about your child, but it’s
worth it. Most communities have a parent organization, usually listed in
the phone book, that matches experienced fathers and mothers with new parents.
Some groups bring parents together around a certain diagnosis, Cerebral
Palsy, for example. Parent groups provide free peer support and are excellent
resources for learning all about this new world.
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Find out everything you can about your child’s diagnosis from your pediatrician,
early intervention program, parent group, local library, state program
for children with special health care needs. Surf the Internet, where every
imaginable diagnosis has a website full of information and resources. If
you lack a computer or don’t know how to surf, ask someone to help. Every
community now has a location with free internet access. Family Voices has
a list of Internet addresses.
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Learn about the hospitals, pediatric specialists, therapy centers, equipment
banks, early childhood programs, and state and private agencies that your
child will use. Ask other parents for advice about where to get the best
care.
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Keep records. Of all phone calls, doctor visits, insurance bills, Medicaid
notices, and forms related to your child. Take notes. Request copies of
everything. Put this paperwork in one place --- a box in the kitchen, a
notebook, a bedroom drawer.
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Become an expert on your child’s health insurance plan, whether it’s through
your employer or Medicaid, especially the benefits paid for by the plan.
If you’ve moved into a managed care system, make sure you ask lots of questions
about how it works.
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Insist that all your child’s providers, from pediatricians to social workers,
practice family-centered care, which acknowledges and supports families
as they raise their children in their homes and communities. Ask us for
family-centered care materials.
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Develop strong partnerships with health and other professionals in your
child’s life, so that you can work together and use the expertise and skills
each of you brings to the care of your youngster. It’s especially helpful
to have one professional who knows you, your family, and your child very
well, and who will advocate with you as a partner.
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Know that YOU are your child’s best advocate. No one else will do the job
as well. Use all the information, contacts, friends and skills you have
gathered to practice your advocacy firmly, but with kindness and humor.
As your child grows up, teach her or him to be an advocate, or prepare
a sibling or friend to do so. Because you won’t be around forever. In the
meantime, it’s wise to take care of yourself, even when you think you can’t.
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Ask Family Voices for help. Call us tollfree (1-888-835-5669) to find brochures,
books, and websites about family-centered care, family-professional partnerships,
fathers networks, information in languages other than English, support
groups, and training conferences.
NOW, GO FORTH AND ADVOCATE!
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for other Family Voices and Vermont Family Voices articles and links