NEW HAVEN >> For 24 years, Dawn Johnson Oduor has raised her profoundly disabled son at home.
Amasai Oduor, who has cerebral palsy, is non-verbal, suffers from spina bifida and is quadriplegic.
Dawn Oduor ended up separated from her husband given the strain of the round-the-clock care on the couple, a not uncommon situation.
Some statistics put the percentage of a marriage collapsing in these households as high as 80 percent.
“Many families like myself — the mom ends up being the major caregiver in the family,” Oduor said at a recent press conference on the looming state and federal budget cuts that help families like Oduor’s where there is no time off from the daily medical routine.
Amasai Oduor has to have a clean catheter placed in his bladder every four hours. He has a cecostomy tube that has to be irrigated every night to evacuate his bowels and he is fed through a gastrointestinal tube.
“Obviously the toll, the emotional, the physical and spiritual toll, on a family with a child with disabilities is severe. It is very isolating,” Oduor said as she stood at the Hill Central School with other advocates for the disabled.
She said her one partner through all of this has been Medicaid.
“Medicaid basically co-parented my son,” said Oduor, who is hoping Congress won’t adopt the large cuts anticipated in Medicaid funding.
The U.S. Senate just released its plan to repeal the Affordable Care Act and replace it with its own version of the Republican American Health Care Act, which passed in the House by four votes.
Early reports said the plan is close to the House version with its massive cuts to Medicaid, which would push the states to cut back on its healthcare plans.
One difference is the Senate plan keeps premium subsidies for some low-income buyers to purchase insurance, but it cuts them back extensively.
The proposal also calls for phasing out the expansion of Medicaid put into effect by the Affordable Care Act over three years, starting in 2020. This would have a direct impact on 31 states, including Connecticut.
The Congressional Budget Office said the House plan would leave 24 million more Americans without health insurance by 2026 and premium increases of 20 percent over the next two years. The CBO is expected to score the Senate version in the next few days.
The House plan also cuts Medicaid by $880 billion — 25 percent — over 10 years, while also capping spending and sending the reduced funds to the state as block grants.
Under a block grant there will no longer be dedicated funding based on reimbursement for needed services, something the Senate version also does.
The Association of School Superintendents fears that school systems will lose out to hospitals and doctors in the competition for Medicaid funds.
A survey by the ASS found that two-thirds of schools use Medicaid funds for the salaries of the health care professionals they use. Other uses are equipment and technology for disabled students, including wheelchairs, exercise equipment and special playground equipment.
U.S. Rep. Rosa DeLauro, D-Conn, this week said Medicaid covers the kind of special education services that Amasai Oduor was able to receive through the 8th-grade at ACES.
School systems send students in need of specialized care to ACES, covering such things as problems with cognition, physical movement or medically-fragile functioning.
Tom Danehy, executive director of ACES, and DeLauro said this is an especially bad time to shift costs to the states, which are struggling.
“So who pays the price of scarce tax dollars? In Connecticut, it’s the 304,871 students with disabilities who live in poverty every day. “They will pay the price by going without care for what for some are life-threatening ailments,” Danehy said.
In Connecticut, $7.8 billion is spent on Medicaid, of which $45 million is the estimated federal reimbursement for Medicaid spending in the schools.
Danehy said some of the things that could be lost with the large drop in Medicaid school spending include: vision and hearing screenings, diabetes and asthma diagnosis and management, vaccinations and behavioral health services provided to low-income families.
He said a 20-percent reduction could mean 188 school nurses losing their jobs; 148 social workers; 121 school counselors, and 150 speech and language pathologists when the state and local districts are asked to pick up the tab.
“It is hard to understand actually where our values are,” DeLauro said. “We do have a moral obligation to ensure that every child has a quality education. We need to uphold that promise for working families.”
Oduor said severely disabled children didn’t ask to be in that position, nor did their families.
“I was not expecting a rocket scientist. I just want a happy, safe and healthy young man. Medicaid I thank you … and I hope and pray that Congress will do the right thing … These are very difficult times for everyone, but we don’t take advantage of the most vulnerable. We are supposed to do justly, love mercy and walk humbly with our God,” Oduor said.