Young mom leaves Ga. to help her disabled son
A single mom and her medically fragile son recently moved from Georgia to Colorado in a bid to gain more coverage for his care.
The medical benefits under Colorado Medicaid have made the move worthwhile.
“It’s like night and day,” Sarah Allen, the mother, said Monday of the coverage options in her new home state. “It’s a massive difference.”
Allen, whose plight was featured in an August GHN article, says that now her son, Aidan, qualifies under Colorado Medicaid for 24/7 nursing care in the home.
While in Marietta, Allen had spent her days caring for Aidan, 3, all the while facing the prospect of becoming homeless.
Born prematurely with a malformed brain, Aidan has multiple health conditions, including cerebral palsy, epilepsy, obstructive sleep apnea and cortical visual impairment. He also has enlarged ventricles, scarring on his brain, and a mild form of microcephaly.
Aidan is fed through a tube 22 hours a day. He can’t sit up by himself, and gets around with help from a wheelchair.
It was an around-theclock job for Allen to care for him.
She battled for more nursing hours for Aidan that would be covered under the Georgia Medicaid program. And because she had to care for Aidan constantly, she couldn’t have a job. They lived primarily on Aidan’s Social Security income of $711 a month.
They were living in a house owned by a generous friend, but that property was about to be sold, so they faced becoming homeless this fall.
The two now live in a rental apartment in the Denver area. After the move, Aidan quickly qualified for Medicaid and for the extended nursing hours.
And under a Colorado Medicaid program, Allen said, she has the chance to earn an income as a certified nursing assistant while caring for her son.
Medicaid programs, run by the individual states, can vary significantly on benefits, as well as on “waiver” programs that can add more types of coverage.
“Every state does something different with their Medicaid dollars,” said Nancy Caulfield, who runs Champions for Children’s Healthcare, and is a nurse who has worked with medically fragile children. “Colorado is doing a great job getting these single parents out of poverty and paying them to care for their child.”
While in Georgia, Allen said, she researched Medicaid programs and found that Colorado offered several waiver programs for children. Meanwhile, she started a crowdfunding site that raised $17,000 in donations for her son. She said she used the money to pay for their trip and also for leasing the apartment for several months.
The move to Denver has not been without problems.
A few days ago, Allen’s car was stolen, and it hasn’t been found. And she said she misses her friends back in Georgia.
She said she plans to attend a nursing assistant program to obtain her certificate. Under a Colorado CNA program for parents, she can care for her son 8 hours a day and get paid an hourly wage for the work, she said. “We’re not going to be homeless because of the pay,” she said Monday.
Benefits vary by state
Allen’s situation in Georgia was not much different from that of other families with medically fragile children.
GHN reported in August that children with medical complexity (multiple serious issues) are one of the smallest but fastest-growing populations of children, experts say. There are an estimated 400,000 such children in the nation, but they account for as much as one-third of health care spending for all children, according to an issue brief from the Lucile Packard Foundation for Children’s Health.
Joe Sarra of the Georgia Advocacy Office, the protection and advocacy organization for people with disabilities in the state, said Monday that families – especially single parents — can face poverty when caring for children with special medical needs.
“Aidan’s story is so important because it shows other states have come up with workable solutions for these families,” Sarra said.
Allen’s move recalls a situation a few years ago when some Georgia families went to live in Colorado so their disabled children could get medical marijuana. Georgia has since legalized medical marijuana for certain conditions.
While in Georgia, Aidan received 28 hours of nursing care in the home each week, paid for by Medicaid. The state, through an intermediary organization, sought to reduce that number to eight hours. A physician, though, prescribed the addition of hours to what Aidan was getting.
The state agency that runs the Georgia Medicaid program, when asked about nursing hours and Aidan’s situation, said in a statement in August that the Georgia Pediatric Program serves children who are medically fragile.
Families seeking skilled nursing services are authorized nursing hours “based on documented medical necessity,” said a Georgia Department of Community Health official.
The agency declined to comment Monday on the family’s move out of Georgia, saying that it can’t comment on individual Medicaid members’ cases.
Colorado is ahead of many states in helping such families, said Ellen Caruso, director of government affairs for the Home Care Association of Colorado.
Under the parent program there, home health agencies pay the certified nursing assistants who are caring for a family member.
The parent CNA program “helps a lot,” Caruso said. “It’s a great program.”
‘Aidan’s story is so important because it shows other states have come up with workable solutions for these families.’ Joe Sarra Georgia Advocacy Office
Georgia Health News, a nonprofit 501(c)3 organization, tracks state medical issues on its website georgiahealthnews.com.
Sarah Allen primes pump used to feed her son Aidan through tube directly into stomach. He must have his high-calorie liquid food for 20 hours every day.
Sarah Allen, holding her son Aidan, may soon be homeless because the house where she lives will be sold, and she has limited resources to find another home suitable for a severely disabled child.
Sarah Allen encourages her son to enjoy a specially-adapted swing in a nearby park. She wears this feeding tube pump in her backpack.