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Thousands of Montgomery County residents are in daily crisis as they struggle to support a loved one with developmental disabilities, according to a report from a work group of parents, care providers and county officials.

The first effort of its kind in the county, the May report provides dozens of measures that together would redefine the county's approach to autism and similar disabilities. It charts a course that would reach more families, create a more proactive support network, increase school and county staff focused on special needs, spur more and better job prospects for the developmentally delayed, and improve access to health care and recreation.

The report is the culmination of more than a year of study by the 18-member "Workgroup on the Future for People with Severe Developmental Disabilities, Including Autism," which County Executive Isiah Leggett backed soon after taking office.

The group is finishing its strategy for getting the report to families who would benefit and the policy makers who would have to buy in. The report marks "a real milestone" for advocates, providers, officials and families caught up in the crisis, said John Kenney, the group's co-chairman and chief of aging and disability services in the county's Department of Health and Human Services.

"We all do feel that progress has already been made," he said.

It will take no small commitment of government sympathy and funding to effect real change to services throughout a person's lifespan, said the group's co-chairwoman Lyda Astrove, whose 18-year-old son Scott has autism. To a large degree, it has to start by changing expectations, she said, from school officials to employers to the community-at-large.

"Even if it just starts the ball rolling," she said. "I'm not expecting that somehow policy makers are going to read this and go ‘Oh my goodness, let's do something!' It can start small and still become something."

Priorities, plans of action

First, the report seeks to "open eyes" and create a sense of urgency in breaking down barriers that families face when they try to access information, find support, put their children into meaningful jobs and provide the person with the range of services that the developmentally delayed need.

Those struggles trace to a bleak starting point: As the number of people with autism and other developmental disabilities grows, families languish sometimes for years on state waiting lists to get behavioral, medical and family services. Ninety-four percent of the more than 18,000 people on the state's Developmental Disabilities Administration waiting list in July 2008 needed services immediately, according to the report. More than 2,800 were Montgomery County residents.

From there, families find a system that many in the survey said was unresponsive and required navigating a complex web of paperwork and red tape while battling with health care providers over what services would be covered. Forty-one percent of the more than 200 families surveyed said they either could not find or could not afford a caregiver and spent on average $1,000 per month out-of-pocket for behavioral and therapeutic services.

Those pressures take a broad toll. One quarter of the survey's respondents said they had to leave their job, while more than a third said they had to cut their hours.

To help ease that burden, the report calls for a formalized family-to-family support network and more before- and after-school programs. The work group is calling on county officials to rework legislative language so that funding can be spent more flexibly to better meet widely diverging needs.

"There's no one-size-fits-all," Kenney said.

Recreational goals

A fuller, more rewarding life for people with disabilities must also include social and recreational activities offered not in the confines of providers' facilities, but in the community at large. The group supports state passage of a law that would guarantee equal recreational access and boost funding for the county's therapeutic recreation programs.

Because of chronic problems in finding space and time through the county's recreational system, Community Support Services Inc. — a Gaithersburg-based provider that runs a school and has more than 30 assisted living homes in the county — built its own gym. In the years since, the benefits have been undeniable.

"We've proven it works. It's not a trial anymore," said Susan Ingram, CSS's executive director and member of the county work group. "What this would mean is the county taking more initiative instead of us having to run everything ourselves."

One of the fundamental — and increasingly bleak — challenges cited in the report is putting special needs people into meaningful and lasting jobs. A 2008 Cornell University study that showed a 42 percent unemployment rate among Maryland adults with developmental disabilities — "and some would say it's as high as 70 [percent]," Kenney said.

Boosting staff in the county school system and in the health and human services department, while ensuring close collaboration between the agencies, will bolster the anxious transition from school settings to adult life.

And so that those young adults enter a marketplace ripe with opportunity, the report urges the county to partner with employers to create "new avenues" for jobs and internships, while also calling on the county and municipal governments to do more hiring themselves.