ATLANTA -- Georgia’s model for ending the segregation of its residents with disabilities from the population at large is so good that it’s becoming a model for other states. But very few Georgians can actually make the move because funding is a relative trickle.

“My friends from Special Olympics and other places don’t have Medicaid waivers,” Macon activist Nandi Isaac said, “so it is hard to get in the community.”

The word “waiver” is shorthand for a package of services that helps people who have disabilities live at home. They are funded by a mix of state and federal dollars. Medicaid rules that would normally assign people who cannot pay for private care to public hospitals or institutions are waived.

Besides being healthier and much more interesting, living in the general population happens to cost about one-third the price of living in a hospital, according to federal numbers.

The state support in a waiver could be as simple as a link to a supportive job or pointing someone toward roommate arrangements. It could mean hiring relief for a family member who is the sole caregiver for a person with a disability.

The vast majority of people who have developmental disabilities do not need the institutionalization that used to be Georgia’s answer to them.

Isaac’s life could not be more different from life in a facility. At 29, she’s young, athletic and living independently with roommates. She has a job, is an advocate on her own account and is an ambassador for the Special Olympics. Her mother put her in school at 3 years old. And Isaac has the waiver that some of her friends lack. That enables her to hire a helper. In fact, that’s how she got her ride from Macon to Atlanta, where, as she’s done for several years, she joined the annual Disability Day rally on Thursday.

“I think it is important to talk to our legislators and say we need waivers, we need funds,” said Isaac, who is legally blind and has Down syndrome. “Every year, we gather together to talk about important rights ... every year we have to speak up.”

Making Georgia do the right thing

Georgia must eventually fund 1,150 waivers like Isaac’s, split between two programs administered through the state Dept. of Behavioral Health and Developmental Disabilities, that serve people who have developmental disabilities such as Down syndrome or autism.

But there are about 6,000 names on the waiting list, according to the Georgia Department of Community Health.

The waiver mandate comes from the federal Department of Justice. It took Georgia to court for civil rights violations, citing cases of gross mismanagement and neglect in some state homes.

“We will use it as a template for our enforcement efforts across the country,” said Assistant U.S. Attorney General Tom Perez when the settlement was announced in 2010.

While the Justice Department cut a path in Georgia, it paved a road in Virginia. Under a 2012 settlement, Virginia will provide 4,200 waivers. Justice is also in settlement talks with Mississippi and Arkansas.

Those numbers mean a lot of cash in the short term but might come in handy in the long term.

In Georgia, about 18,000 people who have developmental disabilities are in the sole care of a person older than 65, according to the Georgia Council on Developmental Disabilities, a state-funded lobby and advocacy group. Some may never come into contact with the system, but others will swell the ranks of the waiting list in the coming years.

“The good thing about the settlement agreement is that the state is funding those services,” said Pat Nobbie, GCDD deputy director.

“The bad thing about the settlement is the state is funding only those services. The need in the community is not being met.”

Eventually, Georgia also must shrink the developmental disabilities community in its six state hospitals. Frank Shelp, commissioner of the Georgia Department of Behavioral Health and Developmental Disabilities, calculates the number of people who will need that full-time, acute care will be about 100.

At a Friday hearing of the state House Appropriations Human Resources Subcommittee, Shelp admitted that some people, though not him, think Georgia’s settlement was rushed and inadequate.

“It is so important that you continue to provide those waivers,” state Rep. Katie Dempsey, R-Rome, told Shelp at the hearing. “If there is another thing you can tighten up, that is what your Legislature wants you to do.”

Gov. Nathan Deal’s draft budget for the fiscal year beginning this July recommends about $20 million for the waiver program, up from about $15 million in the current year.

To contact writer Maggie Lee, e-mail mlee@macon.com.