PARKERSBURG - A study by The Arc says aid and services for the intellectually and developmentally disabled have plateaued.
The Families and Individual Needs for Disability Support survey, called "Still in the Shadows with Their Future Uncertain," found more than 60 percent of caregivers said services available have decreased, said Christina Smith, executive director of The Arc of the Mid-Ohio Valley and The Arc of West Virginia.
A press conference was held Tuesday morning to release key findings of the report and reinforce The Arc's brand and mission and a new logo for the organization. The Arc's beginnings go back to when John F. Kennedy was president.
A study by The Arc says aid and services for the intellectually and developmentally disabled have pl
The F.I.N.D.S. survey included 5,000 respondents starting in July 2010. Among key findings, 20 percent of families had a member quit their job to care for another, more than 80 percent said they didn't have enough retirement savings because of the care and more than 62 percent of parents and caregivers don't know what will happen when they get older.
Because of breakthroughs in medical science, those with developmental disabilities are living longer lives, Smith said.
A key issue is the proposed Medicaid cuts, said Angie Harkness, president of the board of directors of The Arc. Many services and programs, which also affect senior citizens, are funded by Medicaid, she said.
Photo by Jess Mancini
Christina Smith, executive director of The Arc of the Mid-Ohio Valley and West Virginia, discusses Families and Individual Needs for Disability Support “Still in the Shadows with Their Future Uncertain” report during a press conference Tuesday morning.
Her fear is changing Medicaid funding could lead to the re-establishments of institutions such as the Colin-Anderson Center in St. Marys or state mental hospitals and could mean the difference between self-sufficiency and institutionalization, Harkness said.
"We don't want those back," Harkness said.
Bernice Geary and Tina Tanner say all they need is a little help and they can take care of themselves.
"I pay my own bills," Tanner said.
A problem is transportation, she said. Geary and Tanner are dependent on public transportation, primarily the buses, and that dictates their employment.
Buses don't run all the time and taxis are costly, Tanner said. Because the buses only run until around 5:30 p.m. to the mall, transportation there has to be accordingly planned, Geary said.
West Virginia has among the highest populations per capita of those with intellectual and developmental disabilities and receives less funding than most states, Harkness said.
"West Virginia is doing a wonderful job with doing more with less," she said.
At the press conference, besides release of the F.I.N.D.S. study, Smith reinforced efforts to use the correct language to describe those with intellectually and developmentally disabilities. It's not being politically correct not to use terms that are derogatory and hurtful, she said.
Last year, former Gov. Joe Manchin signed into law Senate Bill 1004 which removed all references of mental retardation from the state code, albeit it remains a medical diagnosis, Smith said. Federally, Rosa's Law also removed references to mental retardation, she said.
The Arc is launching an initiative to organize 1 million citizens to make such concerns an issue in the 2012 elections. The organization is working with Lauren Potter, an actress on TV show "Glee" who has Down syndrome, to portray a positive image of those with intellectual and developmental disabilities.
The Arc also announced the Achieve with Us Contest to encourage those with intellectual and developmental disabilities to share their story and a photo highlighting their accomplishments.