Doing good doesn’t always require a billion-dollar government program. Sometimes it’s just about a small idea or two — a way to make life a little better for people who could use a break.
Two such proposals got an airing at the State House this week — bills dealing with very different sets of constituents. One would help provide services to those with early-onset Alzheimer’s. The other would help open up the world of public higher education to students with severe intellectual disabilities and severe autism.
They share only one thing: that their passage would speak to our shared values and our shared humanity. They deal with details that government often neglects. There are no headlines to be made here, and few votes to be won. And yet behind these “details” are real human beings who would benefit enormously from changes that only lawmakers can make.
They are people like Joe Montminy of Plymouth, who was diagnosed with early-onset Alzheimer’s in 2017 at the age of 53.
“This disease steals your identity, steals your experiences. I just don’t want it to take me away from my community,” Montminy told the Joint Committee on Elder Affairs Monday.
Montminy wants only to be able to stay in his home rather than a nursing home, even as his disease progresses. But the MassHealth program that provides nursing home level care under the so-called frail elder waiver doesn’t kick in until age 60.
Legislation filed by Representative Bruce Ayers of Quincy would remove that age requirement for those diagnosed with early-onset Alzheimer’s disease.
“This is a small population, but one that is desperately in need of these types of services,” Ayers told the committee.
Nationwide, some 200,000 to 240,000 people are believed to have early-onset Alzheimer’s — about 5 percent to 6 percent of all Alzheimer’s cases, according to a Mayo Clinic report.
But the heartbreak of the disease — and for a moving account of that we’d refer you to Tom Keane’s Globe Magazine piece on his wife’s diagnosis — ought not to be compounded by the heartbreak of having to leave familiar surroundings for lack of available services.
That is a solvable problem.
On the other hand, the thirst to learn of students with intellectual disabilities or severe autism isn’t so much a problem to be “solved” as a horizon to expand.
After all, the Massachusetts Inclusive Concurrent Enrollment Initiative (MAICEI), which funds partnerships between local school districts and public colleges and universities, allowing students with intellectual disabilities to attend, has existed since 2007. But the grant program is a limited one that varies with budget appropriations from year to year. The program’s 2020 report noted that it served about 8 percent of an estimated 2,660 potentially eligible students, in part because not all school districts opt to participate and some have no nearby college campus.
Now a group of legislators wants to “codify” that grant program — making its funding, which has grown from $1 million in 2015 to more than $1.7 million — more consistent. They also want to throw open the doors of public higher education for a wider group of students, including those with intellectual disabilities and autism who have not been able to pass the MCAS exam. Under the bill, they would be able to participate as nonmatriculated students, taking courses and joining in all aspects of campus life.
Brian Heffernan, who attended MassBay Community College under the MAICEI program and now works at the State House, told the Committee on Higher Education Tuesday, “I had a full social life. I made friends there. This changed my life.”
He took classes in communication and public speaking and he testified about learning to use public transportation to get to class. Now he uses it to get to his job.
Matthew Cullen told the committee how he watched his friends and his brother and sister go off to college, “And I said, ‘Why can’t I do that?’ ” He went to Salem State, where his favorite class was public speaking. Today he works two jobs, adding, “I’m ready for the real world.”
Their stories and those of other students who testified are more than just inspirational; they’re also a testament to what happens when as a society we raise, rather than lower, expectations — and when we continue to open those doors.
“College is transformational for these students,” testified Debra Hart of the Institute for Community Inclusion at UMass Boston. She told the committee that, nationally, some 310 colleges and universities have programs that admit students with intellectual disabilities.
“One year after exiting college, 64 percent of the students had paid employment, compared to just 18 percent for adults with developmental disabilities in the general population,” she said. “The employment rate for individuals with intellectual disability who went to college is well over three times higher.”
Representative Patricia Haddad, a cosponsor of the bill who has been pressing for the legislation for the past six years, said the existing partnerships have “not diluted what goes on at these colleges,” citing letters from the presidents of several of the state’s colleges and universities in support of her bill. “There doesn’t seem to me any reason not to go forward with this. . . . It’s more than time.”
It’s true, some things take time. But young people with intellectual disabilities shouldn’t have to plead for the right to achieve more. Just as those with early-onset Alzheimer’s shouldn’t have to plead to stay in their own homes.
Some things are just the right thing to do. These bills are the right thing to do.
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