Trying to Live Independently

Trying to Live Independently

Couple with disabilities struggle to live on their own because they are not handicapped enough.

Earl Petz fell for his wife Pam immediately when they met at a church social for people with developmental disabilities five years ago.

A middle-aged school custodian, Earl introduced himself to 45 year-old Pam and the two went off into a corner to talk. The next day, he took Pam out to lunch. A year later, they were married.

"People were kind of looking sideways when it happened," said friend and fellow church member Jennifer Mann of the couple’s marriage.

Both Pam and Earl, are developmentally disabled and had lived with their parents until well into their 40s. At the time of the wedding, friends wondered whether they would be able to cope with living on their own.

Four years later, Mann and others seem to have the answer to their question.

Pam and Earl have been evicted from four apartments and recently moved into the Alexandria Hotel along Richmond Highway.

Unlike others who are homeless, Pam and Earl’s major obstacle is not money. They bring in approximately $3,000 monthly between disability and retirement checks and have enough money to be able to afford a decent apartment along the Route 1 corridor, said Keary Kincannon, lead pastor at Rising Hope United Methodist Mission Church.

"The problem is not money. They have enough money. The problem is their disability. They really can’t live alone," said Kincannon.

In previous buildings, Pam and Earl have struggled to keep their apartments clean, leading to roach and other bug infestations. Landlords are now refusing to lease to Pam and Earl because of their poor rental history.

"The office got on us for being dirty and then we had to go live with Larry [Earl’s brother, who is also disabled]," said Pam.

At certain points, Rising Hope tried clean up the couple’s apartments but said the problem is really much larger than their volunteer staff was able to handle. Pam and Earl need long-term assistance with a professional who can teach them how to clean, cook and manage their money for themselves, said Mann.

The church has contacted the Fairfax County Community Services Board and a few other private organizations to seek assistance. Mann is also trying to track down Earl’s student records. If Earl was diagnosed as mentally retarded before the age of 18, he will qualify for significantly more assistance, said Mann.

Pam, who has been diagnosed as developmentally disabled, already receives some services through Fairfax County’s Department of Mental Health and visits with a social worker on regular basis. The church hopes to acquire extra services for her through those connections, said Mann.

In order to be classified as mentally retarded, Earl must score below 70 on an intelligence test and have trouble performing basic life skills such as feeding and dressing himself, said Margaret Kane, director of case management for the county’s mental retardation services department.

But as a resident, Earl could qualify for in-home services, daytime vocational programs and would be assigned a social worker, said Kane.

"It depends on what is needed. Services can range from drop-in support a couple of hours a day to full-time care in a group home," said Kane.

Citizens usually prove mental retardation by presenting documentation of a diagnosis before the age of 18. If documentation is not available, a psychologist can also perform an evaluation to determine if the onset of the disability was probably present before the age of 18, she said.

Kane warned that a lot of people who seem to have mental retardation actually have a less acute developmental disability, which can make services more difficult to acquire.

"There are people with many other developmental disabilities who may not meet the criteria for mental retardation," said Kane. "Most of the folks that we were work with are really very disabled and wouldn’t be able navigate public transportation or get married. We have large numbers of folks who can’t feed or dress themselves."

Mann said she has reason to believe Earl may have been diagnosed as mentally retarded, even though the documentation is missing.

The church has been in contact with Earl’s childhood neighbors and has tracked down Earl’s elementary school principal, who both said the two brothers were classified as mentally retarded.

Kane suggested that Earl and Pam go to a shelter in order to get initially evaluated and placed in the Fairfax County "system."

"A good way to go is to get into a homeless shelter because then they would be connected to the system," she said.

Other advocaqtes said they had concerns Pam and Earl would not be able to negotiate a shelter and might be victimized by other clients. Rising Hope staff members said the couple was also resisting a staying in shelter, where rules often dictate that people can’t act as if they are a couple.

Situations like Pam and Earl’s are becoming more prevalent across Fairfax County as elderly parents are dying or finding it more difficult to care for their adult children, said Nancy Mercer, executive director of The Arc of Northern Virginia, an advocacy group for people with developmental disabilities.

"I meet parents in their 80s who have developmentally disabled children that are not socialized to interact with others. There is a co-dependency," said Mercer.

The amount of services available for people with developmental disabilities who are higher functioning is also limited, said Mercer.

"If you are in the middle of the pack like these two, you are up a creek without a paddle," she said.

Fairfax County needs to look seriously at providing affordable housing and long-term care for adults like Pam and Earl and elderly people who need assistance, said Mercer.

"People are talking about [providing housing for] teachers and fire fighters but this is a huge issue in Fairfax County," said Mercer.