Moulton champions bills in light of uncle with Down syndrome
July 09-- Jul. 9--SALEM -- For U.S. Rep. Seth Moulton, D-Salem, there is a personal reason why he has championed two bipartisan bills to increase job training and health care opportunities for those with intellectual and developmental disabilities.
Moulton is co-sponsoring legislation for those with disabilities in light of his late uncle, Andrew M. Meader, who lived much of his life in Longmeadow, to the south of Springfield, and who was born with Down syndrome on June 24, 1964.
Moulton's grandparents already had six kids, including Moulton's mother, Lynn, of Marblehead, when Meader was born, but did not have him institutionalized, which was the recommendation of doctors in those days, Moulton said.
"My grandparents brought him home, introduced him to his six brothers and sisters, one of whom was my mom, and he became an integral part of our family," said Moulton, who grew up in Marblehead.
While it was not always easy for his grandparents, Moulton said his uncle went on to live a productive life.
"Far from being a burden on our family's lives, he brightened our lives every day," Moulton said.
Moulton wound up talking about his uncle and one of the bills he is sponsoring, called the HEADs Up Act, at the start of his presidential bid during the Politics and Eggs Breakfast in Bedford, New Hampshire, on April 24.
Swampscott resident and dentist Dr. Steven Perlman, a pioneer in advocating for providing dental and medical care for those with intellectual and developmental disabilities, had just stood up and praised Moulton for championing the bill.
"We've been trying to get that going for years and you are the first person that's actually going to try to improve health care for that vulnerable population," Perlman told the breakfast.
"And when you brought this idea, this proposal to our office," Moulton told Perlman, "my first reaction was as I read about it, was just utter shock that this hasn't been pursued in 30 years. So we got a Republican co-sponsor. And we are adding Republican cosponsors to this bill every day. It's the right thing to do, and we are going to get it done."
"It would help so much," said Perlman, in an interview, about applying the medically underserved designation to about 7.5 million Americans with intellectual and developmental disabilities. Physicians who serve the medically underserved could get student loans repaid, for instance, but not now if they work with this population.
The designation applies to certain populations, such as African Americans, Latin Americans and Native Americans who face barriers to accessing health care and who live within certain zip codes where there are not enough primary care providers, a high infant mortality rate, a high poverty rate or a high elderly population. It's criteria that fits those with intellectual disabilities, Perlman said.
Meader, who died in October 2012 at age 48, led a productive life, by most measures.
He graduated from Hanover Park High School in Florham Park, New Jersey, according to his obituary. He was involved with Special Olympics.
"He was a huge part of my life growing up," Moulton said. He recalls visits from his uncle and his grandparents.
"For whatever reason he and I became particularly close," Moulton said.
But Meader also touched the lives of hundreds of people he met over the years bagging groceries at a local Stop Shop.
"But, when he sadly died a few years ago," Moulton said, "hundreds of people showed up to his funeral at Longmeadow Church. It was unbelievable the impact that he had in the lives of so many other people."
HEADs Up Act
Of the two bills Moulton has filed in recent months to improve the lives of those with disabilities one is called the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act of 2019, or HEADs Up for short.
The bill would direct the U.S. Health Resources and Services Administration to designate those with intellectual and developmental disabilities as "medically underserved."
This agency "advocates for those who are cut off from quality health care due to economics, geography or medical vulnerability."
"The change in designation would give Americans with Intellectual and Developmental Disabilities access to new primary care and specialist services, incentivize new research, and authorize more favorable reimbursement rates for providers who treat Americans with Intellectual and Developmental Disabilities," according to a press release from Moulton's office.
Everyone has health care needs, Moulton said, none more so than adults with disabilities, who can be a challenge to care for both financially and logistically. Moulton said his uncle was lucky to have his grandparents be able to care for him most of his life.
"We've been looking for a champion to do this because there is a long back story to this," said Jo Ann Simons, the CEO of Danvers-based Northeast Arc, whose grown son was born with Down syndrome, and who lives independently on Cape Cod. "People with intellectual disabilities have the lowest health status of anyone in the world."
There has been some resistance to adding another group with this designation, Simons said, as it would mean more groups competing for the same amount of federal dollars.
But it would be "a game changer," Simons said. It would mean health centers would get more money to serve this population. The designation may also provide incentives to better train the medical community to treat those with disabilities.
"To me, this is a civil rights issue," Simons said. People with disabilities have the right to the same access to health care as everyone else.
She asked what was the point of giving someone the highest quality of education when those like her son face an increased risk from diabetes, heart disease and stroke that could hold them back from keeping a job.
Also last month, Moulton introduced the Customized Approaches to Providing and Building Independent Lives of Inclusion for Transition-aged Youth Act of 2019 with U.S. Rep. Cathy McMorris Rodgers, R-Washington.
If passed, the CAPABILITY Act would help those with disabilities make the transition from school to the workforce as they turn 22 and age out school.
If passed, the law would fund six competitive job training grants that span four years for states to create customized work opportunities, expand fair-wage jobs for workplaces that integrate those with disabilities, and teach independent living and job skills.
"This legislation is important because it really addresses the next frontier for people with disabilities," said Rodgers, whose son, Cole, 12, has Down syndrome. Now is the time for such legislation to be passed, she said, amid a booming economy and a record number of people coming off the sidelines and joining the job market.
"Having a job is so important," Rodgers said. "It's more than a paycheck."
Many individuals with disabilities want to work given the chance, she said.
"I think it's going to open up more opportunities for individuals to get those job skills," Rodgers said. "This would allow us to think beyond what is already available." The challenge, Rodgers said, is the skills training needs to be customized to each person.
"Employment is so critical," said Northeast Arc's Simons, who noted that those with disabilities are going to be adults much longer than they are going to be children.
"There is nothing but applause," Simons said, for the bill.
Northeast Arc is already providing vocational and job opportunities for students transitioning from school to work through its Heritage Industries services. Among its many programs, Peabody's Breaking Grounds Cafe employs those with and without disabilities by providing training in the food service industry.
The bill may also give Northeast Arc the ability "to demonstrate how far ahead we are," sharing the nonprofit's know-how in other parts of the country. Simons noted her 40-year-old son holds down two part-time jobs, which affords him the time to compete in Special Olympics.
"And I saw how fulfilling my uncle's job at Stop Shop was for him and for the community," Moulton said. "He was doing valuable work where he earned a salary. He was helping pay for the government services that support him and all of us with his taxes, and he was performing a service for the community that the community obviously appreciated given how many showed up for his funeral."
Ethan Forman can be reached at 978-338-2673, by email at firstname.lastname@example.org or on Twitter at @TannerSalemNews.