For Virginians with disabilities, waiting list grows faster than aid

Brandon Christie finished high school three years ago, so like most people at that stage he's ready to leave home.

Here's the holdup:

The Virginia Beach 24-year-old has cerebral palsy, which limits him mentally and physically. He has seizures, requiring him to take four medications and to have around-the-clock supervision.

The General Assembly this session provided funding for an additional 600 people with mental disabilities like Christie to live more independently in the community.

That may sound like a lot, but in Virginia Beach, which will receive 27 of those slots, Christie is one of about 270 people on a waiting list. At least 99 are ahead of him.

Families and advocates for people with disabilities are grateful for the 600 slots - called Medicaid waivers - particularly since Gov. Timothy M. Kaine first proposed funding only 150 new slots over two years.

But the need continues to grow faster than the number of slots. Every year, another group of students with disabilities leaves high school - 30 to 40 in Virginia Beach alone - and that keeps adding to the list.

At the same time, people in state hospitals and nursing homes are using the waivers to move into community settings.

"It's like they're never going to be able to catch up," said Ann Christie, Brandon Christie's mother. "We just don't see an end to it. We know people who have been on the list 10 years."

The 600 slots that become available on July 1 will go quickly in a state where 4,000 people, 900 of them in Hampton Roads, are on the waiting list.

A state-generated report to the General Assembly estimates that 580 new people are given priority on the waiting list every year. At that rate, it would take 800 slots a year for eight years to cut the list to a manageable level, the report said.

In some budget years, legislators provide an infusion of money, as in 2004, when $50 million was allocated for 1,000 new slots. In other years, the funding falls off.

The Medicaid waiver was established by Virginia in 1991 to shift people from institutional care to community care. The idea was to use Medicaid money, which is a combination of state and federal dollars, for care in the community rather than in institutions and nursing homes.

However, a larger percentage of this generation's people who are disabled have been cared for at home rather than in institutions, and when they leave the school system at 21, their parents are left trying to fill the gap.

Both of Brandon Christie's parents work, and they've had to juggle their schedules to care for him.

Brandon works six hours a week at Walgreens. And he attends a Cerebral Palsy of Virginia day program twice a week for six hours a day, which costs $250 a month.

A Medicaid waiver would allow him to move into a group home and receive services that could provide more socialization and job skills. Ann Christie says her son is eager to move out on his own, and she's worried he'll lose some of his skills if he spends too much time at home.

"I'm ready to move away," Brandon Christie said. "I'm ready for an apartment."

The waiting list, though, is divided into two groups, urgent and non-urgent.

Those on the urgent list have parents or other caregivers who are getting too old or sick to care for them. The urgent list also includes people "aging out" of residential facilities for children or other places providing care.

Because that list is continually changing, it's hard for people on the non-urgent list - like Brandon Christie - to know where they stand.

Jay Lazier, who directs mental retardation services for the Virginia Beach Department of Human Services, said case managers there will be prioritizing their lists during the next few months to see who is most in need.

Maureen Hollowell, director of advocacy and services at the Endependence Center, which helps people with disabilities, said some types of disabilities didn't get any increase in slots.

A Medicaid waiver that was established in 2001 for people with developmental disabilities, such as autism and brain injuries, got no new slots during this budget session. About 600 people in the state are on the waiting list for this kind of waiver.

"It's frustrating and perplexing because there's no rhyme or reason to it," Hollowell said. "Just because their disability is different, their needs have been set aside."

Samantha Gregg of Virginia Beach has an 11-year-old son, David, who is autistic. He's been on the waiting list for the developmental disability waiver for five years. The single mother of three wants to use the money to sign her son up for special therapy and to hire people to help care for him, which can be an around-the-clock endeavor.

Without new slots, people on the list must wait until someone with a waiver no longer needs it because he or she has moved out of state or into an institution or has died.

Another source for independent-living money will become available this summer, but it's geared toward residents of long-term care facilities.

Virginia is one of 31 states participating in a "Money Follows the Person" project, which starting July 1 will help people move from long-term-care institutions back into community settings. It's expected that $28 million in federal Medicaid dollars will help deinstitutionalize about 1,000 elderly people and people who are disabled over the next several years.

The project also aims to build a better network of community services for people with disabilities.

Children with disabilities whose families care for them at home, however, would not be eligible, leaving them to wait for more Medicaid waiver slots.

"I keep thinking his number is going to come up, but year after year goes by and it doesn't," Gregg said. "It's been draining financially and emotionally."

Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@pilotonline.com