Mass. rep working to make medical appointments easier for people with disabilities
Janet Rico is grateful to have good care for her daughter, Lauren, who is confined to a wheelchair. She is diagnosed with microcephaly, seizures, and developmental delay.
But she knows how difficult it can be to find medical care for Lauren and others with disabilities.
Over the years of looking for treatment, she has seen the challenges first hand.
"I brought her to the dentist years ago," Rico said, "and the dental hygienist said, 'Do you really want me to clean her teeth?'
On another occasion she says they were at a health care clinic and she overheard a physician who didn't know Lauren say, 'Oh boy, this is going to be a huge lift, seeing her.'
Rico says she told the doctor she could help, but inside, she was hurt.
"I wanted to cry," she said. "Almost 28 years of making sure Lauren is safe, so, to see her as a burden to someone is just heartbreaking."
Janet is now grateful to hear about an effort called the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act of 2018, known as the HEADs Up Act, sponsored by Congressman Seth Moulton.
It would provide more funds for services, research and higher reimbursement rates for providers who serve people with disabilities, by designating people with intellectual and developmental disabilities as a medically underserved population.
"It's the right thing to do. Morally, economically, medically, it just makes sense," Congressman Moulton said.
And for Moulton, it's personal. His uncle Andrew had Down syndrome.
"My family lived with him supported him throughout his entire life," Congressman Moulton said. "We recognized he needed special attention and special care, it's something everybody recognizes."
With that family support, Andrew went on to graduate from high school. He also became a Special Olympics star.
"The Heads Up Act simply formalizes the fact that this is an underserved population, a medically underserved population that needs additional resources for their care," Moulton said.
According to Moulton's office, the only other specially designated medically under served population are migratory and seasonal agricultural workers, the homeless, and residents of public housing. This list has not been updated since it was consolidated into law in 1996 under the Health Centers Consolidation Act.
The designation as a special medically under served population would open up more than 25 government programs, including federal funding for health centers and public health infrastructure, eligibility to apply for federal funding to develop and operate Community Health Centers, access to loan repayment and training programs, incentives for physicians to treat this population in the form of higher reimbursement rates.
The grant program provides assistance to primary care providers, nurses, dentists. mental/behavioral health providers, and other health professionals who work with medically underserved populations.
Advocates, including The Arc of Massachusetts, argue better care for disabled patients will lead to fewer expensive emergency room visits and other problems.
"We have to invest in a law like this to get that outcome," explained Leo Sarkissian, Executive Director of the Arc of Massachusetts. He's working to help build support for the bill.
For Rico, her daughter, Lauren, motivates her to fight for others.
"To be able to offer these services to this underserved population would be a huge gain," she said.