CHARLESTON, W.Va. — Families for the Intellectual and Developmental Disabilities (IDD) waiver in West Virginia say they hope lawmakers will revisit a 10 percent cut to the program that was approved during this year’s regular 60-day session.

A rally was held outside the House of Delegates Chamber Sunday afternoon as lawmakers met for the first day of interim committee meetings.

Kanawha County parent Tracy White, who led Sunday’s rally, is pushing for a state budget fix.

White’s son has been enrolled in the IDD waiver program through the state Department of Human Services (DHS). It provides services to families and caregivers that help to teach, train and support their loved ones so they can reach the highest level of independence possible in their lives.

“Our youngest son is on waiver and if these programs are cut, individuals like my son and a lot of the other families here are going to have to make some tough decisions. Those decisions could be putting them in ISS (Institutional Shareholder Services) settings instead of living in their homes that they’ve done so their entire lives,” White said.

Parents and advocates of people with intellectual or developmental disabilities (IDD) are rallying outside the House Chamber this afternoon to urge lawmakers to support a waiver fix after funding was cut during this year’s 60-day session. @WVMetroNews pic.twitter.com/aydjpjEfZn

— Carrie Hodousek (@CarrieHodousek) April 14, 2024

Families can begin applying to the program once a child turns 3; however, advocates said cuts to the program could mean longer wait times for those on the IDD list.

Darla Irvin is bound to a wheelchair. She said the cuts will negatively impact her way of living.

“Without the waiver, I will not be able to live on my own because I can’t have the supports I need to get dressed and to go out into the community or do anything so please don’t cut our lifeline,” Irvin said.

Cabell County parent Christy Black’s 20-year-old daughter Gracie, who has down syndrome, has relied on IDD since she was 5-years-old.

“IDD waiver is a life line. It’s critical for my daughter and it’s critical for my family,” she said. “While we are tired, we will never be too tired to fight for our family members.”

Black said her biggest concern is what will happen after she’s no longer alive and able to care for her daughter.

“The waiver provides services and support along with supports that we put in place that will allow her to stay in our home when we’re gone. The waiver allows her to have supports that she can be a working, tax-paying citizen,” she said.

Jackson County parent Trina Clark echoed those concerns and said she wants to see wage increases for at-home respite care workers.

“The program as a whole needs to be looked at from DHHR’s level of why aren’t services being provided? It’s because the people aren’t there to do the work,” she said. “We need the money to entice people to come and want to do the work.”

Clark has a 16-year-old son and 13-year-old daughter who each have an unspecified genetic disorder. They have required full care since they were infants.

“They function mentally at about an 18-month-old level. It’s all daily living activities: feeding, diapering, they’re both in wheelchairs and they’re non-verbal, so it’s a lot on a daily basis,” she said.

About $108 million was set to go toward the IDD waiver program, but in the final hours of this year’s regular session, the budget for IDD and other Medicaid programs were cut by 10 percent. The waiver program comes with a three-to-one federal match. It would be an $11 million cut at the state level and a $33 million cut at the federal level.

Del. Michael Hite (R-Berkeley) was among the lawmakers to speak at Sunday’s rally. Del. Mike Pushkin (D-Kanawha) also spoke. Hite said he was shocked at the cuts and stood up the last day of the session to protect the IDD waiver program.

“You can imagine my surprise when the budget was cut by $11 million,” Hite told the crowd. “I kept asking how could this be?”

Gov. Jim Justice has expressed concerns about the cuts as he plans to call a special session next month to address the issue. The governor referred to it as a “dog’s mess.”

“This is going to be complicated to implement. It’s going to be complicated to figure out. We have absolutely got to fix this. And for us to wait way up in May, if we don’t watch out we’re going to be on deadline in July and then we’re going to be in a real mess,” Justice said in March.

The issue will be discussed during the Joint Standing Committee on Health at 4 p.m. Monday.

Nearly 6,000 people are enrolled in the IDD waiver program and more than 600 are on the waitlist, according to DHS.