ANNAPOLIS, Md.--(BUSINESS WIRE)-- The results of a new survey released today indicate that one-third of parents and caregivers of individuals with intellectual and developmental disabilities (I/DD) nationwide – an estimated one million families – are on waiting lists for government funded services, with the average wait more than five years.
The Families and Individual Needs for Disability Support (FINDS) survey, conducted by The Arc – the nation’s largest and oldest human rights organization for the I/DD community – also found that the promise of integrated, community-based employment is not being met. Eighty-five percent of families reported that their adult family members with I/DD are not employed at all.
“Fifty years ago, President Kennedy called on the nation to bring people living with intellectual and developmental disabilities ‘out of the shadows,’ to give them opportunities to lead productive, quality lives,” says Stephen H. Morgan, Acting Director of The Arc Maryland. “Sadly, the data released today shows that these efforts have plateaued.”
While acknowledging that budget cuts and economic strain have hurt all Americans, the survey indicates that 7 million individuals living with I/DD and their families are among the hardest hit, with access to needed services drastically reduced. According to the survey, 62 percent of caregivers report a decrease in services for their family member with a disability.
The findings are even more troubling, according to Morgan, when you consider that current Congressional budget proposals threaten to dismantle Medicaid and Medicare, making it even harder for people with I/DD and their families to achieve.
Among other major findings, the FINDS survey revealed:
- More than 75 percent of families report problems accessing non-institutional community care, trained reliable homecare providers, services and resources;
- 1 out of 5 families (20 percent) report that someone in the family had to quit a job to stay at home and support the needs of a family member;
- More than 80 percent of families do not have enough retirement savings because they have used personal funds to compensate for the lack of available services;
- 62 percent of parents and caregivers do not have a plan for where the person they support will live when the parent/caregiver gets older.
Morgan also comments, “While our local Arc organizations in Maryland provide critical services and find jobs for thousands of people with disabilities, we still have thousands waiting for services. The recent alcohol tax victory will help about 500 families, but there are more than 5,000 still waiting.”
The Arc Prince George’s County works with many families waiting for services like Lisa Brady of Greenbelt, whose 12-year-old daughter, Jessica, has autism. Lisa’s family has been on the DDA Waiting List for 8 years. Lisa wants to be involved in parent trainings, and she wants Jessica to have access to various types of therapies, so she has been pulling money from her retirement account to pay for Jessica’s therapy. She is worried about the future financial stability of her family and says, “I don’t think about the things I want. I always think about what Jess needs, but I don’t know what is going to happen when I retire.”
Spurred by the survey, The Arc is launching a new effort to organize a million people to “come out of the shadows” and make their needs an issue in the 2012 elections.
To raise awareness, The Arc has partnered with Lauren Potter, star of the hit FOX show “Glee” who has Down syndrome. The Arc and Potter will kick off a public service announcement television campaign.
The Arc is also conducting a national contest via its Facebook fan page. From today until July 14, entrants can share stories and photos highlighting the accomplishments of individuals with I/DD for the chance to receive a trip for two to Washington, D.C. For more information, visit www.facebook.com/thearcus.
For more information or to see the survey results, visit www.thearc.org.
Heather East, 410-571-9320
The Arc Baltimore
Kate McGuire, 410-296-2272 ext. 5206
The Arc of Carroll County
Lisa Albin, 410-848-4124
The Arc Central Chesapeake
Kristen Lasker, 410-990-1904
The Arc of Frederick County
Shauna Clay, 301-663-0909 ext. 40
The Arc of Howard
Carol Beatty, 410-730-0638
The Arc Montgomery County
Deborah Mark, 301-984-5777 ext. 1245
The Arc of Northern Chesapeake
Shawn Kros, 410-836-7177
The Arc of Prince George’s County
Jessica Neely, 301-925-7050 ext. 256
The Arc of Southern Maryland
Nkeshi Free, 410-535-2413, ext. 113
KEYWORDS: United States North America Maryland
INDUSTRY KEYWORDS: Other Consumer Health Public Policy/Government Healthcare Reform State/Local Consumer General Health