Panel advocates for improved support for intellectually disabled

Residents packed The Barn at Trackside Teen Center Monday evening, Dec. 8,  for an informational symposium for families of children with intellectual and developmental disabilities.

Led by Arc Connecticut Executive Director Leslie Simoes, state Rep. Gail Lavielle (R-143) and Wiltonian Alison Jacobson, the discussion covered several topics, including Department of Developmental Services (DDS) funding and residential support services.

Attendees also heard and shared personal experiences of having a loved one with an intellectual or developmental disability.

Legislature

With the new legislative session starting next month, Ms. Lavielle said, the budget already faces a $3-billion deficit and there’s a lot of work to be done with regard to serving people with intellectual and developmental disabilities.

“When you talk about underserved populations, this is it — you’re looking it right in the eyes, and this has to be done and it has to be done well,” said Ms. Lavielle.

“Second thing is … one size fits all just doesn’t work. Individuals have different needs, and as we move forward, we’re going to have to be sure that gets taken into account.”

Ms. Lavielle said she and fellow representatives  are responsible for making sure their constituents understand the complexities of health services. She said it’s also important for them to hear from the public directly.

“You have a huge role to play in ensuring that the system is sustainable and meets the needs of folks with intellectual and developmental disabilities,” she said. “The greater your involvement, the more we’ll be able to achieve on your behalf.”

Funding

Ms. Jacobson shared her experiences as a mother of an intellectually disabled son, as well as what she’s learned about the DDS system.

“My son Spencer is 16 and he is an amazing kid. The question that comes to my mind is, What happens when I die? What is going to happen to him?” said Ms. Jacobson.

“Just recently, Spencer said to me, ‘I’m going to live with you forever, Mom,’ and the way things are going, that’s a reality, because we have no choice.”

Ms. Jacobson said she was horrified at what she heard during a recent trip to Hartford, where she learned of the 2014 DDS budget — the second-highest per person in the country.

“There’s a $1.1-billion budget for DDS, most of which is going to state-run institutions and facilities, and each person in these state-run facilities is getting $343,000 per year,” said Ms. Jacobson, pointing out that her family of five, which includes her son Spencer and a husband with multiple sclerosis, lives on $150,000 to $160,000 a year.

“Because people in the state-run institutions receive $343,000 a year, said Ms. Jacobson, “guess what our children get? Zero,” she said.

“There is no money — not a penny — for our children, unless there’s an emergency. You know what an emergency constitutes? One of us dying.”

Because of this, Ms. Jacobson said, she and her son are each left with one choice.

“My son has to live with me, and I have to work myself into the ground caring for him, trying to secure college maybe for my other children, but that’s not looking too good,” she said, “and hopefully working until I’m about 90. I don’t think that’s fair.

Waiting lists

State-run facilities, which include regional centers, public group homes and the Southbury Training School, also have waiting lists that, Ms. Simoes said, have added 234 names in a three-months’ span.

Not only is there no plan to fund or address the growing waiting lists, said Ms. Simoes, but the DDS support system doesn’t have adequate funding for residential supports.

“Services are provided by both the state of Connecticut DDS and private community providers,” said Ms. Simoes, “but the costs of residential services provided by the DDS in group homes and institutions far exceed the costs of residential services offered by private community providers.”

According to Ms. Simoes, residential services in public group homes can cover 366 individuals at $338,730 per person, while private group homes can cover 2,994 individuals at $129,114 per person.

“While the costs for state services continue to spiral year after year,” she said, “private providers have been asked to do more and provide the same services as the public sector for much less.”

If services were reallocated from public sector facilities to private ones, Ms. Simoes said, not only would the waiting list be eliminated, but the DDS estimated it would cost only $88,000 per person.

“Our DDS system is unfair and unsustainable, and it’s up to families to educate lawmakers and challenge them to work with us to create a better, more sustainable system of supports,” said Ms. Simoes.

Ms. Lavielle echoed this by encouraging the audience to “explore whether you’d like to get involved in helping us come to the right decision as we go forward with trying to improve our system and services.”

For more information on how to get involved, call Ms. Lavielle at 860-240-8700.