Families with disabilities advocate for support - WALB.com, Albany News, Weather, Sports

Families with disabilities advocate for support

March 20, 2007

Albany--  Advocates for people with disabilities are traveling state to state to get the word out, they need resources and support. Millions of people have to deal with disabilities ranging from autism to mental retardation. That's hard emotionally and financially. Some help may be on the way for families.

It's a picture that melts his mother's heart. "He is just my salvation, my light," said Jane Lowery.

30-year-old Evans Jones smiles and poses in his apron.

"He loves to cook. His favorite show is Emeril Live," said Lowery. But his ability to learn to cook is slower than others. Evans was born with a disability, severe mental retardation. His mother, Jane Lowery had to learn to adjust.

"It needs to be your life to do right by them and it will break the bank," said Lowery.

Lowery was paying for her son's heavy medical expenses out of pocket. That's something that more families than you'd expect have to deal with. "One and a half percent of all citizens will have developmental disabilities and 400 years ago one and a half percent had them and 400 years from now one and a half of everybody born will have developmental disabilities," said Dr. Steve Hall.

Right now, there are Medicaid waivers that help families dealing with disabilities but they are limited. Director for the Department of Developmental Disabilities Dr. Steve Hall says the new NOW and Comprehensive waivers in the works will be a help.

"They'll be able to take those dollars and then they get to choose what services they want provided instead of the money going directly to some group," said Hall.

Families or individuals would be able to use the money for a variety of things including individual budgets, hiring community guides, community living support and even dental services.  It could also be used to help many individuals with disabilities move towards something they strive for, independence.  Possible positive changes that have come from advocacy in several states by the Atlanta Alliance on Developmental Disabilities and Unlock the Waiting Lists Campaign.  

The forums are called "Conversations That Matter" and for families dealing with disabilities, these conversations really do matter.

"Advocate, advocate, advocate. Do not take no for an answer," said Lowery. It worked for Evans.  His mother fought for him.

"Its been that way since he was born," said Lowery. They once said Evans wouldn't qualify for a medicaid waiver because he wasn't institutionalized growing up. His mother talked to state senators and representatives. He now uses his waiver towards having his own home with supervision, something that makes Lowery proud.

"When he's happy I'm happy. When he's not happy, Mama's not happy," said Lowery. Mama is happy.  So is her son. He's able to do what he loves because someone advocated for it.

Although these waivers could be on the way, here's the downside. There's already more than 5,000 people on waiting lists for the current MRWP waiver. A campaign by the name of Unlock The Waiting List is working to reduce those lists and so far they've made progress. 

They've increased the number of alotted service slots from 10 to 1,500.  This year, they're asking state lawmakers for 2,000.

The NOW and Comprehensive waivers could go into effect by July if lawmakers pass it.

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