Rose Getts, right, has devoted her life to caring for her sister Mary Kimble, who has Down syndrome as well as Alzheimer’s disease. Not unlike other family members across the state, she is now concerned about proposed changes to the Intellectual Development Disabilities Waiver program and how reductions would negatively impact this population.
MARTINSBURG, W.Va. — Not unlike other family members and caregivers, Rose Getts is concerned about proposed changes to the Intellectual Development Disabilities Waiver program, and what any reductions may mean to her 67-year-old sister Mary Kimble.
Getts is no stranger to this program since she provides around-the-clock care to Kimble, who has Down syndrome as well as a multitude of other medical problems, including Alzheimer’s disease.
As a result, Getts has been busy learning about the draft five-year renewal application now under consideration by the West Virginia Department of Health and Human Resources’ Bureau for Medical Services.
She’s also been contacting state officials, including Gov. Earl Ray Tomblin, about her concerns regarding the negative impact that will result from the proposed reductions.
For example, in August 2010, the state paid a parent for 4-6 hours of care for a child or an adult, which was subsequently increased to 8 hours for a child and up to 12 hours for an adult. The renewal application returns to 2010 hour limits for children and increases the adult services to 8 hours.
Currently, parents of minor children can be paid $32,000 annually for 8 hours of caregiving a day, regardless of whether the child is in school or not. The proposal will allow parents to earn $20,000 annually (non-taxable by the IRS) by being paid for 4 hours of care a day on days their child is in school and 6 hours a day when the child is not in school. And she’s also been spreading the word among family members who face similar problems, advocacy that has to be done as quickly as possible since a 30-day public comment period ends Friday at 5 p.m.
That’s important since the program provides community-based services to people who have intellectual and/or developmental disabilities – individuals who would otherwise qualify for placement in an institutional setting, Getts said.
It provides services in natural settings, homes and communities where the individual resides, works and shops, she said.
While she appreciates having her sister at home, Getts said it is both a tremendous responsibility and challenge to adequately provide all of the care she requires 24-hours a day.
“It literally is a matter of life and death,” she said, adding that even being able to leave her home for a quick trip to the grocery store requires that someone else be available to care for Kimble.
As a result, Getts is concerned about changes that may be made in terms of respite care – time that is provided to give primary caregivers a break from those duties.
Currently, a parent can receive almost 5 hours a day of respite care. However, the state is proposing to reduce that to average of 2 hours a day and to only allow respite care to be billed on a day when no other direct care service is billed, she said.
“I’m not just concerned about Mary, because I know other families who are also going to have to make changes if the waiver is reduced. I am afraid these people will literally be shoved into the closet,” she said.
State DHHR officials understand the concerns, but also have to address the program’s growing pricetag as well as a long waiting list of interested individuals.
In 2014, the IDDW covered 4,534 individuals for a total expenditure of $385 million, with sn average cost per member of $85,000. West Virginia appropriates $89 million a year from state general revenue funds for the IDDW program. For the last three years, the state spent more than $41 million in state dollars over its allotted budget. Since FY 2010, the amount spent for IDDW has increased by more than $110 million, according to DHHR data.
“The proposed changes to the IDD Waiver are intended to help the program operate within its budget and allow the program to serve more beneficiaries. Currently, there are more than 1,000 West Virginians on the waiting list for these services,” said Jeremiah Samples, DHHR Deputy Secretary of Public Health and Insurance.
“By making adjustments, we believe that we will be able to assist more state residents who qualify for these services,” Samples said.
Samples said West Virginia’s program is more generous than other states, especially since it is one of the few that pays parents to care for their children under existing guidelines.
He said the proposed draft waiver is aimed at better aligning West Virginia with surrounding states, controlling spending and allowing more people to receive these services.
“The IDD Waiver program was never intended to support the family financially; it is based on the assumption that natural supports, such as family and friends, would provide some services without being paid for them,” Samples said.
– Staff writer Jenni Vincent can be reached at 304-263-8931, ext. 131.