Senator Eliot Shapleigh - El Paso, Texas

AUSTIN — When people with disabilities demonstrated at Gov. Rick Perry's office five years ago to seek assurances that legislative budget-chopping would spare services that help them live independently, more than two dozen were arrested.

"It beats dying in a nursing home," activist Danny Saenz said then of his arrest.

Many budget skirmishes later, the fight goes on.

Advocates for people with disabilities fought off the most severe proposed cuts in community-based services in 2003, when lawmakers faced a huge budget shortfall. But even in flush times, they haven't secured enough funds to serve all of the nearly 84,500 people with disabilities awaiting community services, although lawmakers have allocated money to help more of them.

"We have good years and bad years, just like a family. ... In 2007, we were definitely in a position to eliminate the waiting list," said Sen. Judith Zaffirini, D-Laredo, the Senate Finance Committee vice chairwoman who has fought for such services and credits Lt. Gov. David Dewhurst for helping. "It is a moral responsibility."

Perry spokeswoman Allison Castle noted the 2003 budget increased the overall number served in the community despite the money crunch, although some programs saw reductions.

"The governor continues to work toward increasing opportunities for Texans with disabilities to live and work in our great state," Castle said.

As lawmakers begin work on the two-year budget they'll adopt next year, advocates are pushing again.

House Speaker Tom Craddick's office said reducing the waiting list is a priority. Rep. Warren Chisum, R-Pampa, House Appropriations Committee chairman, plans a June meeting on the issue.

Dewhurst said in a statement he'll work to reduce waiting lists "in the context of the entire budget."

The longest wait for help on the so-called interest list, tallied by the Texas Department of Aging and Disability Services, is 8.6 years. The average varies by program, from less than a year to 3.4 years. Eligibility still must be determined for those waiting.

Lawmakers last year allocated an additional $107 million to shorten the waiting list, but it would take more than eight times that amount over two years to serve everyone in line, according to one estimate.

The latest state tally shows 100,231 clients on the interest list for all community programs combined. Because some people sign up for multiple programs, the actual number of people waiting is 84,428.

"These are individuals who could enter an institution on the state taxpayers' dollar tomorrow. There's no waiting list to get into nursing homes or state schools," said Dennis Borel of the Coalition of Texans with Disabilities. "Yet, there's a huge waiting list for community care. Why? Because people want to live in the community. They don't want to live in an institution. They don't want to put their child with a cognitive disability in a state school."

Institutional care is an entitlement under the federal Medicaid program, and people in nursing homes who choose to move into the community can get services without going on the waiting list if they meet eligibility criteria. Allowing all those waiting for community programs the same access is a priority for disability advocates.

Bob Kafka of Adapt, an advocacy group for the rights of people with disabilities, said many people thrive in the community but not in an institution.

"The best analogy is what happens when you pull a plant up from its roots and try to replant it. Invariably it wilts. Frequently it dies," Kafka said. Faced with the restrictions of a nursing home, he said, "What most people do is, they just wither."

Colleen Horton, public policy director for the University of Texas Center for Disability Studies, said community care not only is preferred by many but also is generally less expensive.

"Our state is willing to pay $140,000 a year to put a child in a state school, but they can't give a family 30- or 40- or 50- (thousand dollars) they need for in-home support," Horton said.

Some say it's important to keep institutions as a choice.

"We do see stakeholders that would prefer there be no institutions. At the same time, we see stakeholders who prefer their loved ones receive their services in state schools or nursing facilities," said Department of Aging and Disability Services spokeswoman Cecilia Fedorov. "What DADS tries to do is provide a choice."

Saenz, 48, who uses a wheelchair because he was born with cerebral palsy and who helps people in nursing homes transition back to the community, lives independently with the help of subsidized rent and attendant services.

An early taste of institutional life helped shape his views. From ages 3 to 5, he was in a hospital in Corpus Christi for rehabilitation and therapy, spending only weekends at home with his family.

"It was real bad for this kid," said Saenz, who said he would become so upset at being returned to the hospital on Sunday evenings that "they threatened my mom and said, 'If he keeps acting this way when you bring him back, you might have to not take him back (home) anymore.' "

For today's parents, community services open up some room for more than one unrelenting focus.

Ivy Goldstein's 14-year-old daughter, Sophie, who has an intellectual disability and seizure disorder, spent more than six years on a waiting list, years when, Goldstein said, "I couldn't get out my front door" while looking after her. Sophie receives attendant care and services such as recreational therapy, allowing her to go more places.

"She needs fairly constant supervision or oversight because she doesn't understand abstract things like danger ... and her seizures require an immediate medical response,"

Goldstein said an institution wasn't something she could consider.

"I love this child with all my heart, and I want her home with me," she said.

As lawmakers work on the next budget, advocates would like to see Perry and legislative leaders make community services a priority.

"To Governor Perry's credit ... he took the initiative to restore many of those (2003) cuts," Borel said. "This presents a great opportunity for the governor to not only recover from the cuts of the disastrous 2003 legislative session but build on some of the good things that have happened in '05 and '07."