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by Jody Steinberg and Joyce Ringer
In January, more than 1,300 Georgians with disabilities, plus their friends,
families and supporters converged under the gold dome for Disability Day at
the Capitol. Their collective demand was that Georgia move citizens with
disabilities out of institutions and stop cutting vital services to the
community.
For the first time in five years, family demands kept special education
consultant Julia Bowen of Chamblee from attending “D-Day,” sponsored by the
Governor’s Council on Developmental Disabilities. But her presence was
evident in the dozens of parents she helped recruit and train. Later, some
shared with her their excitement at being part of Georgia’s swelling ranks
of disability advocates.
“I think it woke up Governor Perdue,” says Bowen, who had contacted him
previously. “He said he’d support us, but budget cuts really hurt people
with disabilities.”
Showing up in “numbers too big to ignore” really makes a difference, she
adds.
Advocacy doesn’t have to mean lobbying the legislature for new laws,
testifying before senate committees, litigating injustice, or organizing
community demonstrations and training, though Bowen has done most of that.
Almost every action that preserves a child’s rights and dignity in a society
unprepared to embrace them is advocacy.
Joyce Ringer, executive director of the Georgia Advocacy Office, defines
advocacy as “speaking on behalf of a person or issue as vigorously as you
would for yourself. It involves sacrificing your time, energy and even
reputation, and is clear of conflict of interest.”
For Bowen, mother of three, two of whom have disabilities, being an advocate
“is the hardest, the most difficult thing I’ve ever done in my life, but
it’s certainly the most important.”
“The goal of advocacy is to give your child the best chance at becoming a
productive, happy, helpful, educated and fulfilled adult who contributes to
society,” she explains. “That has always been my goal in advocating for my
children. Short-term goals and long- term goals keep you focused for your
child. You should be a part of each and every decision that is made about
your child’s education.”
“You the parent have real knowledge and appreciation for the gifts and
strengths present in your child,” adds Ringer. “Don’t let them be buried by
a culture that only sees ‘not able to,’ ‘can’t’ and ‘needs.’”
Being an advocate for your child takes knowledge and passion and building a
community of support. It’s important to create a vision of success for your
child and to stick to it. Helping him realize that vision is where the
advocacy becomes necessary.
In a world dictated by limited resources, families of individuals with
disabilities face an endless battle to obtain the services, support and
resources required to live. Georgia has a poor reputation for supporting its
citizens with disabilities. Some families have moved to other states where
they know they will get better support for their children.
That reputation leaves many families “financially strapped and hung out to
dry,” says Bowen, if they do not qualify for Medicaid or Social Security
assistance, or if they are on the endless waiting list for a coveted waiver,
which pays for medical treatments and services.
Parents of children with disabilities often commiserate about battles with
the school system to ensure that their children receive the appropriate
education, therapies and opportunities for peer interaction to which they
are entitled. Support groups and informal networking help parents learn how
to successfully negotiate their child’s education.
For Cappie Suttle of Marietta, just getting access to education for her
child with special medical needs became a story of persistence. The mother
of four couldn’t find a daycare that would accept 2-year-old twins Mason and
Conner, because Mason needs to be fed liquid meals through a g-tube in his
stomach.
“All you do is pour the food in, it takes five minutes, but nobody wanted to
take the time to learn how to care for my child,” she explains. I talked to
everyone – private daycares, the big name chains … nobody would accommodate
him.”
“I felt frustrated and very abandoned … like I was all alone,” says Suttle,
who had previously relied on nursing staff for advice. Due to complications
from pre-term birth, Mason had a tracheotomy for almost two years. “Once the
trach was out, it was like, what am I supposed to do? How do I mainstream
him into a normal life?”
After an exhaustive search, a co-worker recommended Chelsey’s Garden, a
childcare center in Marietta. Proprietor Elizabeth Thomas was happy to
welcome both Conner and Mason. Therapists from Marcus Institute, which
treats Conner for his feeding problems, came to the center to train his new
caretakers. To no one’s surprise, everything is going smoothly.
But her first taste of parental advocacy left a bad taste in Suttle’s mouth,
one that many parents live with every day. “Mason is a normal kid, he just
needs help eating. And no one wanted to take the time to do it. It hurt,”
she says.
Parents caring for children with lifelong disabilities understand all too
well the daily battle for recognition and fair treatment. However, experts
encourage them to avoid confrontation at all costs.
“Harmful advocacy comes from making unnecessary enemies of the people who
provide services for your child,” says Ringer, who advises addressing your
child’s issues from a human rights perspective. “The best advocacy begins
with an assumption of good intentions from all parties and becomes
adversarial only as a last resort.”
Nonetheless, says Bowen, parents frequently find themselves in adversarial
situations with their schools and often lack the skills to resolve the
problems. They fear retaliation or harassment at the schools their children
attend every day. “When they see other parents getting together to come
forward and talk about these issues, it helps,” says Bowen, who developed a
program to train parents to advocate at their child’s school.
A critical component of advocacy is building relationships, says Ringer.
After your family, your strongest allies should be the community in which
you live, work and play. “Know your neighbors and make sure they know and
appreciate your child,” advises Ringer. When a funding issue is attached to
a beloved community member, it is more likely to generate support.
“If you don’t stand up for your child, no one else will,” reminds Bowen.
Whether it’s school, the doctor, the community center or your neighborhood,
Bowen urges parents to make informed decisions.
Parenting two children with disabilities into their teen years and adulthood
has profoundly impacted Bowen’s life. Recently, she graduated from the
ultimate advocacy program, Partners in Policymaking of the Atlanta Alliance
on Developmental Disabilities. The eight-weekend course, taught from
September through May, teaches participants the skills to advocate for
citizens with disabilities and how to “make a significant impact on their
communities.”
Bowen continues to advocate relentlessly, recruit new parent advocates, and
encourage community involvement. While it isn’t easy, she believes advocacy
can be one of the most rewarding experiences a parent can have.
“The people I’ve come in contact with through the world of disability
advocacy is absolutely the most phenomenal group of people I’ve ever met,”
she explains. “It’s natural to want to help, and it’s a natural tendency to
want to reach out and share those skills to make a difference.”
The Toughest Job You’ll Ever Love
It’s never easy, but the rewards of advocacy make the efforts worthwhile,
say Atlanta parents Denise Quigley and Julia Bowen. They offer these tips
for other parents wanting to create the best opportunities for their child
with a disability.
1. Focus on dreams, not concerns.
2. Focus on your child and his childhood, not the disability.
3. Know the law and your child’s rights and use them.
4. Know your child’s strengths and weaknesses; do not let him be defined by
the disability.
5. In case of conflict, focus on the problem, not the people. Be prepared to
compromise.
6. Be courteous, respectful and put forth your best effort.
7. Communicate in writing regularly with the teacher and school
administrators.
8. Teach children at an appropriate age to advocate for themselves.
9. Teach them self-determination, self-pride and People First Language.
10. Use People-First Language and teach it to others.
11. Connect with other parents or family members through support groups.
12. Provide fact sheets on your child’s special needs for all individuals
that work with your child.
13. Presume competence and have high expectations; provide tools for
success.
14. Ask for help and encouragement.
15. Give others the opportunity to connect with your child – their lives
will be richer for it.
16. Enjoy the moment – the years pass quickly.
Advocacy Training: Apply for Partners in Policymaking
Partners in Policymaking is an innovative leadership training opportunity
that teaches people with disabilities and their families about the
legislative process, how to influence public officials and policymakers, and
how to lead and serve their communities.
The Atlanta Alliance on Developmental Disabilities issues and receives
applications through June for the September class. Scholarships for travel,
lodging and other expenses needed to attend the eight-weekend training
sessions are available. For information, call 404-881-9777 or e-mail
dave@aadd.org.
Georgia’s Statewide Advocacy Resource
The Georgia Advocacy Office serves all Georgians with disabilities or mental
illness. Contact GAO at 404-885-1234 or visit
www.thegao.org
Reprinted with permission from Atlanta Parent magazine.
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“The only pure and consistent advocates for a child are his or her parents
or family members,” explains Betsy Primm, coordinator of Georgia Learning
Resource Services Metro-North branch. “That doesn’t mean that educators
don’t advocate every day for their students, but year in and year out, that
is a parent’s role.” |
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