State is ‘behind the curve’

By Mike Savino
Journal Inquirer
Posted: Friday, January 16

Lorraine DeFreitas of Vernon has been in what she describes as a “seven-year” battle trying to find the right treatment for her 28-year-old daughter, who has been diagnosed with both an intellectual disability and a mental illness.

Adding to her difficulties in finding treatment for her daughter, who is also on the autism spectrum, is that aid from the Department of Develop-mental Services has been cut drastically in recent years, forcing her daughter to go from having 24/7 care to having help just 42 hours per week.

DeFreitas was one of two dozen Connecticut residents and advocates of the disabled to share their concerns with lawmakers Thursday regarding aid from DDS.

The Intellectual and Developmental Disabilities Caucus, created in the fall, held its first public hearing at the Capitol, and hundreds of advocates came out to support speakers who called for the state to make more money available for their needs.

The crowd Thursday filled a committee room in the Legislative Office Building with a capacity for nearly 200 people and spilled into two smaller rooms, which were set up to allow for a viewing of the proceedings.

Speakers shared their hardships caring for a loved one with an intellectual or learning disability, and they told the caucus that DDS budget cuts have made the challenge more difficult.

“I wish I could tell you what a success Lisa is living in the community, but the truth is her physical and mental health have deteriorated in the seven years she has been in DDS adult residential and day program services,” DeFreitas said about her daughter.

DeFreitas said her daughter currently lives in on her own in a Newington apartment, but her family has had to cut care as DDS had cut their aid by more than two-thirds.

She said Lisa used to receive care 24 hours a day from a housemate, but they had to move her to a different level of housing and are gradually reducing her care to 42 hours a week. DeFreitas also said DDS staff tried to move Lisa, but that facility said she was “too volatile” and wouldn’t accept her.

Lisa was returned to a day program that also isn’t equipped to address her needs and recommended a different placement, DeFreitas said.

Some speakers further expressed concerns about what would happen to their loved ones when they died, saying placement in an institution as an adult for the first time could result in shock.

While those who spoke agreed DDS was providing enough financial support to families in need, they seemed to point the finger at different things causing problems.

Some parents criticized the state for not providing more money to DDS in the budget.

“Our families have taken hits year after year with budget cuts,” said Lauralynn Lewis of Old Lyme. “You have balanced the budget on the backs of our children — children that cannot speak for themselves.”
But others said they believed the state could free up money within DDS’s current budget.

Shelagh McClure, a West Hartford resident and chairwoman of the Connecticut Council on Developmental Disabilities, urged the state to close the six remaining state-run institutions by 2020.

McClure referenced research that supports the closure of state-run institutions and found that parents are increasingly supporting community placements and day treatment programs.

She also said three states, including Massachusetts, have decided in recent months to close all of their institutions, which can costs hundreds of thousands of dollars per resident annually.

“Connecticut is behind the curve on this issue, with no plan, and no plan to plan for the closure of its six antiquated and expensive institutions,” McClure said.

Lawmakers in attendance at Thursday’s meeting agreed the state needs to address families’ needs, but budget deficits exceeding $1 billion in each of the next two budget years makes options difficult.

“It’s evident that we’re not doing enough,” state Rep. Gayle Mulligan, R-Hebron, said. She added that the state “can’t take a step back,” even while trying to balance the current budget.

State Sen. Stephen T. Cassano, D-Manchester, said the state should make helping families in need a priority, but it may mean that “you rob Peter to pay Paul” to make it fit within the budget.

State Sen. Tony Guglielmo, R-Stafford, agreed, saying the state needs to start “switching priorities.”
He suggested the state could cut back on the aid it provides to businesses, especially larger ones, to help DDS.

Guglielmo also said the legislature should look at longer-term solutions to address the concerns raised Thursday, including the possibility of closing state-run institutions.

Cassano agreed, saying the state needs to trying to find a long-term solution on what programs it wants to put into place.

“You have to have a plan, and right now we don’t have a plan,” he said.