Families concerned by cuts in care for developmentally disabled

By John Howell
Posted 4/3/18

Pam Goes says her 30-year-old son, Paul, “reminds you of a three-year-old toddler.”

He doesn’t speak. He doesn’t tell you if he doesn’t feel well, if his diaper is wet or if someone has …

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Families concerned by cuts in care for developmentally disabled

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Pam Goes says her 30-year-old son, Paul, “reminds you of a three-year-old toddler.”

He doesn’t speak. He doesn’t tell you if he doesn’t feel well, if his diaper is wet or if someone has hurt or violated him. Goes is concerned for Paul’s health and safety, as he is “totally reliant on other people.”

Goes, who was at the State House Thursday with upwards of 200 developmentally disabled, their caregivers and their family members, also said, “I’m terrified.”

She doesn’t know how Paul will react to new people, people who don’t know him and understand him.

What worries her most is that Goes doesn’t know what will become of Paul and her younger son, who also has developmental disabilities, when she and her husband are gone.

That is the long-range concern. She is also worried by what could happen this year and what the governor’s budget could mean for those people who care for Paul. He lives at a group home run by West Bay Residential Services.

Goes was one of two parents to share their stories as the Community Provider Network of Rhode Island, representing 23 private care providing agencies, staged a “Day of Action” in the State House rotunda. The network is fearful the governor’s budget would result in cuts in funding to the developmentally disabled and then, on another level, are seeking wage increases in step with increases in the minimum wage.

David Graves, whose 30-year-old daughter Elizabeth has cerebral palsy, spoke about the importance of consistency of caregivers.

“As the parents of a child with cerebral palsy, we know how critically important it is for agencies caring for people with intellectual and developmental disabilities to hire and retain qualified staff,” he said. “With the spending cuts outlined in the proposed state budget, this will become impossible, and will put the emotional and physical well being of our daughter and others in jeopardy.”

According to Donna Martin, CPNRI executive director, the state’s 4,000 developmentally disabled citizens are cared for by a staff of 5,000 full- and part-time personnel. She said the average pay for these people is $11.35 an hour, making it difficult for them to stay in their jobs as well as for agencies such as West Bay and Trudeau Memorial Center, both in Warwick, to recruit.

Under legislation introduced by Rep. Teresa Tanzi, the hourly pay of these caregivers would be linked to the minimum wage that is now $10.10, but slated to increase to $10.50 on Jan. 1, 2019. Should the legislation gain approval, with the increase in the minimum wage there would be a proportionate increase for caregivers.

As Martin describes it, the budget presents a more immediate crisis. She said the Division of Developmental Disabilities for the Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals [BHDDH] was budgeted $228 million for the current fiscal year, but that based on the current level of spending will have spent $238.5 million by the end of the year on June 30. Yet, she noted that the governor’s budget would allocated $220.1 million to the division, a shortfall of $18 million from what would be a level-funded budget.

Eric Beane, Secretary of the Rhode Island Executive Office of Health and Human Services, who was in the audience, defended the governor’s budget, saying, “this is a more challenging climate” than last year. He left the door open, if only a bit, however.

“We hope to make more investments…revenues are up slightly,” he said.

Tanzi didn’t offer a read on how the House leadership would respond to the budget or her legislation.

“I understand these are tough financial times,” she said. She said she doesn’t want to see the budget balanced “on the backs of those who can’t care for themselves.”

The network also has an ally in Rep. Evan Shanley of Warwick, who has introduced legislation that would raise wages for caretakers of individuals with developmental disabilities to $15 an hour over a three-year period.

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