“By and large, social work has ignored this population,” said Raymond Franzem Ph.D., an adjunct professor at GSS who will be on the panel. “There are few, if any, schools of social work that have courses in developmental disabilities.”
“There isn’t a license program that I know of,” said John V. DeJesus, associate executive director at Creative LifeStyles, Inc., a nonprofit that develops programs for the population. DeJesus will also be a panelist. “The majority of employees at Creative LifeStyles, myself included, don’t have a background in developmental disabilities. Plus, there is a brain drain in the field.”
New York State, Wisconsin, and Massachusetts, are the top three states spending money in the area through Medicaid dollars, DeJesus said.
“But with the new administration, we’re in a massive restructuring,” he said. “We’re being forced to create a new identity for what we want to be, [as]a lot of people see this as an adult babysitting service.”
Federal Cuts vs. Return on Investment
As states face cuts in federal dollars, DeJesus said that many are looking at the government aid to the disabilities community as too small a return on investment. But he said that measuring the earning power of a person with developmental disabilities ignores the impact that state aid has on that person’s caregivers—many of whom must forgo their own earning potential in order to take care of their relative.
“There is a movement to change programming so that people who are in adult day programs get into the community and into employment,” said Franzem.
Franzem said that many within the community are on the autism spectrum, where only 30 percent have a cognitive disability, with more than half on the middle to low end of the autism spectrum. Yet their caregivers fear that if they go to work, the person would lose their benefits. That would affect the entire family.
“Family members are afraid they’ll lose their SSI, and they’re especially afraid to lose Medicaid,” he said. “A few policy changes should be made so that people can earn a little bit of both.
“The problem with state programs is we decide to give them art projects day after day, month after month, year after year, [until]we’ve got a situation where our sons or daughters stay in extended care for the rest of their life.”
“This is far more than the people we serve, it’s also about the families’ perspectives on their loved ones, and how much they think they are capable of,” said DeJesus.
“No starting point is the same for anybody, but we need to introduce a support structure for where they want to go next.”
For more information on “Empowering People with Special Needs: Helping Individuals with Intellectual Disabilities Reach Their Highest Potential,” visit the event page.