Debate creates ripples locally
■ Potential Medicaid cuts have the Philpot family concerned about providing long-term care for their special needs son.
The national health care debate is hitting close to home for some local parents of disabled children.
Renee Philpot of Siloam Springs is concerned that Medicaid cuts embedded in the Better Care Reconciliation Act could impact her 17-year-old son, Zach Philpot, who has severe special needs.
Because of his age, Zach is currently transitioning from childhood to adult programs. His family is trying to plan the rest of his life and project what his needs will be in the future.
“With Medicaid changes, we have no promise the services and supports he will need will be available to him,” Renee said.
Senate Majority Leader Mitch McConnell (R-Ky.) postponed a vote on the initial version of the bill on Tuesday because there was not enough Republican support for it to pass the Senate, according to a report in the Arkansas Democrat-Gazette. Republican lawmakers spent the week reworking the bill in private, with hopes of creating a revised edition.
As originally written, the bill has the potential to cause harm to America’s weakest and most vulnerable citizens, including children with disabilities, according to Theresa White, director of communications for Friendship Community Care, a statewide
W hile our legislators are in their secret location making decisions that will directly affect my son’s life, I hope they decide which of my son’s life sustaining medications I should stop giving him. Renee Philpot Parent of a special needs child and Friendship Community Care employee
provider of services to individuals with disabilities.
Over the next 10 years, the bill proposes making $860 billion in cuts that will affect individuals with developmental disabilities, the mentally ill, elderly and many other programs, White said.
“No one argues changes need to be made and positive budgets are important for our nation’s economy,” White said. “It’s who and what services must pay the price and be denied lifesustaining dollars to accomplish this task.”
Renee, who is an employee of Friendship Community Care and whose son receives services from the organization, said that her family has worked hard to keep Zach at home and out of an institution. They teach him new skills daily to help him work toward independence, she said.
“The supports he needs today differ greatly from what he may need 10 years from now,” Renee said. “With AHCA, our services may be locked in based on what his needs are today. What if his needs change? Will your health care needs change over the next
10 years? Of course they will.”
Renee said her son deserves more than the bare minimum.
“As an American, it is a right to live a productive and independent life,” she said. “As a family, we provide as much as we can and will continue to do so, but there is no way we will ever be able to financially meet all his needs.”
Many American families work hard to coordinate the lives of their children with special needs and disabilities, White said. It takes a full cabinet of medications, therapists, adaptive equipment, specialized medical professionals, director support help in the home, and schools providing care to special-needs children. All these critical supports are necessary so that parents can continue to work and pay taxes, she said.
Renee said Zach’s lifesustaining medications cost more than $5,000 a month and his nutritional supplement needs cost about $3,000 a month. In addition, he requires a primary care physician, neurologist, genetic specialist, GI specialists, physical therapists, occupational therapists and speech therapists. He also has an ear, nose and throat specialist, and specialized vision and dental care.
“The cost is more than any family can bear,” Renee said. “Applying for assistance when he was 2 months old was one of the hardest things we’ve ever done. My husband and I grew up being taught we were to work hard and pay our own way. It took a lot to ask for help, but it is an absolute necessity to keep our son alive.”
“While our legislators are in their secret location making decisions that will directly affect my son’s life, I hope they decide which of my son’s life-sustaining medications I should stop giving him,” Renee said.
Gov. Asa Hutchinson suggested during a news conference on Thursday that the bill should be revised to preserve more federal support for Medicaid and other subsidies that help low-income people buy coverage, the Arkansas Democrat-Gazette reported.
On Friday morning, it was still unclear what parts of the bill were being revised. McConnell expressed hope that the bill could come to a vote after the Senate returns from the Fourth of July holiday, the report stated.
If the bill passes without revisions that protect Medicaid and becomes the approved budget, the decision will come back to the state with a block grant, White said. White encouraged community members with concerns about the health care bill to contact their local legislators.
“There are no safeguards in place to assure that those funds will be used on behalf of the ones who need it the most,” she said. “Arkansas is already struggling to provide services for this unique group of individuals. Any additional cuts will assure a loss of critical coverage.”