- The Washington Times - Sunday, September 23, 2001

The fantasy of winning the lottery differs in everyone.

Some people might blow their earnings on a vacation home with an ocean view. Some might begin a classic car collection. Others might quit work and go fishing forever.

Springfield mother Marcia Praeger has another idea of how she would spend her earnings.

"It would all go for Erin to set her up for life, and those like her," Mrs. Praeger says.

At the moment, Erin Praeger, 24, is not set up for life. Indeed, it seems Mrs. Praeger and her husband, Dirck, a retired Marine, will need to hit the jackpot to ensure that their daughter, who is deaf and blind, receives the specialized care they believe she needs.

Like parents of disabled adults everywhere, the Praegers for years have provided inexhaustible physical, emotional and financial support to their daughter. It is their wish, especially as they glimpse their own mortality, to see that she receives support and care in a group-home environment in which she can thrive for the rest of her life.

The Praegers, like thousands of Virginia families of developmentally disabled adults and thousands more nationwide, are caught in a quagmire of long-term funding and staffing limitations that have left them anxious and frustrated.

"The most important service residential service, which is a group home or a supervised apartment is not available for Erin because of lack of funding," says Mr. Praeger, who works as a civilian systems engineer. "She's eligible for it, like everyone else on the waiting list, but because of a lack of [government] funding, she can't get it."

Mr. Praeger estimates that an appropriate group-home setting and treatment for Miss Praeger would cost from $4,000 to $5,000 per month. Generally, community settings such as group homes are less expensive than institutional placement.

The Praegers are not unusual in desiring community-based care for their daughter, says Jeannie Cummins, director of advocacy and programs for the Arc of Northern Virginia, a nonprofit advocacy organization for the disabled.

"Most families today want to see their son or daughter be as involved and included in their community as possible," she says. "There are very few people who would choose to live in an institution. Some people need that level of care I won't deny that but very few would choose to spend their lives in one."

To provide Miss Praeger with this community-based care, says Mr. Praeger, "we could liquidate all of our assets and take everything and throw it at Erin, but then we eventually would become wards of the state ourselves. It's really a tough nut."

Says Mrs. Praeger: "Erin deserves a life and some happiness. She deserves a chance to be on her own."

Changing times

Americans haven't always believed that people like Erin should get any chances, says David Braddock, executive director of the Coleman Institute for Cognitive Disabilities at the University of Colorado School of Medicine. Mr. Braddock has been involved with the developmentally disabled for 33 years and has testified before Congress on the current problems within the care delivery system.

"The U.S., like so many other developing nations, ignored people with developmental disabilities as if they didn't exist," he says. "We're engaged now in a period of recognition of the rights of people with developmental disabilities and our responsibilities toward them. We're in the process of catching up with those generations of neglect, and so it shouldn't be surprising that we've fallen behind. The modern era didn't occur until the last 20 years. "

Mr. Braddock points to several elements that influence the current demand for services. One is the graying of America, due, in part, to increased longevity and the size of the baby-boom generation. Most people with developmental disabilities live with family caregivers, he explains, so formal living arrangements must be found when these caregivers get too old to shoulder the demands, both physical and psychological, of providing for a person with disabilities.

The second force is the increased longevity of people with developmental disabilities. For example, he says, 9 years was the average age at death for someone with Down syndrome during the 1920s. The average age at death rose to 30.5 years in the 1960s and 55.8 years in 1993. With continued sophistication in medical care, many people with disabilities can expect to have a life span equal to the general population.

Like the general population, people with disabilities require basic services, including education.

All children in this country are eligible to be educated within the public-school system. Once they "age out" of the system at 22, young adults with developmental disabilities can apply for county funding for day support services such as vocational training and recreation.

But applying is not the same as receiving, says Tamar Heller, head of the Department of Disability and Human Development at the University of Illinois at Chicago.

"Funding for family supports are woefully inadequate," Ms. Heller says. "In fact, there are no mandated services after public school."

More than 70,000 developmentally disabled people nationwide are on a waiting list for some kind of day support, she says.

In that regard, Miss Praeger was one of the lucky ones. Virginia, through the Department of the Visually Handicapped, paid from $46,000 to $50,000 to send the young woman through 18 months of specialized care at the Helen Keller National Center, a school for the deaf and blind in Sands Point, N.Y. There she has polished vocational and daily personal-care skills. Her program nearly completed, Miss Praeger will return home next month to her parents and younger brother and to an uncertain future.

Miss Praeger needs constant specialized support and services to live comfortably, maintain her independence and realize her potential, her parents say. Without these factors, she will lose whatever edge she has gained at the Helen Keller National Center.

The next step

Miss Praeger's parents applied for funding for her under Virginia's Medicaid Mental Retardation Waiver program, which allows the state to direct Medicaid funds toward community-based supports such as group homes, independent living training and personal assistance. The federal government matches state contributions to the waiver program. Eligibility is based on the level of assistance a person might need to qualify for long-term Medicaid care.

"Medicaid only used to fund placements in institutions," Ms. Cummins says. "The Medicaid waiver diverts funding that would be going to institutional placement and the services would have to cost less."

But names are being added to the waiver eligibility list more quickly than they are removed, she says. Nationally, the waiver waiting list is 80,000 names strong. In Virginia, the current number is 1,400.

But even if every person's place were funded, says Ms. Cummins, the problem would not be solved.

"Community agencies that operate group homes are receiving few referrals to fill vacancies," she says. "These agencies cannot afford to operate homes at less than full capacity, so many are downsizing and closing homes."

The final problem, she says, is that the reimbursement rate for service providers under the MR waiver has stayed about the same since the waiver was put in place in 1991. The result? Even a job in fast food may seem more appetizing to many in the employment line.

Officials in Virginia's Department of Medical Assistance Services (DMAS), the state Medicaid agency, are well aware of the problem, says spokeswoman Leah Hamaker, and are taking steps to address it.

In recent actions, she says, the department has increased the number of individuals served from 3,100 in 1998 to more than 4,700 in 2000. MR waiver expenditures have increased by 63 percent since Gov. James S. Gilmore III took office.

Last year, Mr. Gilmore convened a task force comprising representatives from community-service boards, providers, advocates and family members to revise the waiver. The changes, she explains, would include strengthening provisions for quality, examining ways to develop provider networks, add more consumer direction for the services, and add the element of freedom of choice of provider. Ms. Hamaker says approval may come this month.

"We are working really hard with this new waiver, and we are trying to address everyone's concerns," she says. "We are committed to serving this population."

But that commitment won't remedy Erin Praeger's situation, say her parents. They say they know of a new group home in Staunton, Va. about 150 miles away from their home in Springfield that has been created specifically for the deaf-blind.

"This is almost a once-in-a-lifetime opportunity for Erin for there to be an opening at the time she is coming home from Helen Keller," says her father, a veteran of the Vietnam War who served two tours of duty. "But she has zip, zero, no chance. The people want her there, but she's not funded."

Nor is Bart Sufficool.

A pediatric neurotransmitter disease called Succinic Semialdehyde Dehydrogenase Deficiency years ago robbed Mr. Sufficool of typical development and affected his motor and cognitive skills. Now 22, he lives with his parents, Bob and Mary Jane, in McLean.

"We still have play dates," his mother says. "And I'm waiting for Sesame Street to give me an award for being their longest-lasting viewer. We're fortunate, though, because Bart has a very good sense of humor and he's fun."

But Bart Sufficool is dependent upon his parents for his every need and requires 24-hour supervision, including exquisitely detailed oversight of his diet.

The Sufficools say that providing that care is exhausting and even dangerous. Recently, Bart Sufficool suffered a seizure while Mrs. Sufficool was bathing him in the bathtub. Alone with him in the house, she only could drain the tub and comfort her son until her husband arrived home.

Medication adjustments seem to have ameliorated the seizures, but the basic facts of life remain.

"So here he is," Mr. Sufficool says. "You have a child who's 22 and you have some decisions to make. He's a legal adult. He has no money and no skills" save for the monthly $531 in Supplemental Security Income (SSI) he receives.

Actually, the younger Mr. Sufficool is able to earn a small amount his most recent paycheck was for $4 for performing a variety of tasks such as sorting clothing hangers for department stores and replacing Metro maps at bus stops. This employment is coordinated and supervised via his newly acquired county-funded day-support placement in Springfield.

"My wife and I haven't been away alone together in 21 years," the elder Mr. Sufficool says. Life in retirement is but a dream as long as the Sufficools must support their son. He says he will continue to report to his job as an electronic engineer while Mrs. Sufficool runs her home-based interior-designing business, ever available to her son when he arrives home in the afternoon from day support.

But his parents say it is not all about them.

"From a parents' standpoint, your desire is for your child to have friends, peers and a social life," Mrs. Sufficool says. "We think he would be just as happy with friends, and we think he is entitled."

Bart Sufficool's 25-year-old sister is married and a seminary student in Kentucky. And, say his parents, he was raised to believe that he would grow up to live with his friends and have a job and have a life "as normal a life as he could have," his mother says.

"Most people don't live with mom and dad for the rest of their lives. I'd like him to be able to have something to do. There's no spontaneity in his life at all. No one ever calls and says, 'Hey, do you want to go to the movies?' How old do you have to be before mom stops arranging your fun?"

The Sufficools would like to help their son make a transition to a permanent group-living situation, but the younger Mr. Sufficool will have to wait his turn for Medicaid-funded services via the MR waiver if his turn ever comes.

"The reality is, this kid would be better off with us dead," his father says. "Then Bart would be put on the emergency list."

This "emergency list" is a clause to the MR waiver stipulating that developmentally disabled people can become eligible for emergency placement if both parents are hospitalized or die. According to the Arc, however, even emergencies may not be funded. In Virginia, for example, of the 572 emergency requests for waiver services DMAS received from July to October 2000, just 281 were approved or referred to other funding sources.

The Sufficools are vehemently opposed to using an emergency situation as the springboard for permanent placement for Bart.

"Children with mental handicaps don't take change well," Mrs. Sufficool says. "In one day, your child would not only lose his last surviving parent but his home, as well. We want to do it gradually."

"The bottom line is that all these parents want to be parents," Ms. Cummins says. "They want to celebrate their children's achievements and see their children through the rites of passage like we all do. It's just that they want to be able to wear the parent hat like all parents do."

She continues: "They don't want to be their child's attorney, nurse, case manager and therapist for the rest of their lives. It's neither good for the parent nor for the child."

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