MA Hearing on Regulations to Help Developmentally Disabled Adults

The 22-year-old founder of the organization, Christine Simpson, and her son Benjamin, who suffers from the rare disease EEF1A2 (one of 8 people worldwide diagnosed with the disease), have aged out of specialized day programs in schools .

WESTBOROUGH – When Christine Simpson created a day program for adults with developmental and intellectual delays in Westborough, she always had her son first and foremost in her mind.

Benjamin was diagnosed with such a rare disease that when doctors finally made the decision, he was only the eighth person in the world with such a diagnosis.

EEF1a2 disease is a spontaneous neurological genetic problem that presents with seizures, developmental delays, and intellectual disability.

His diagnosis qualifies Benjamin for services provided and paid for by the state Department of Developmental Services and provided through the Westborough Local School District. However, when he turns 22 on July 1, he will no longer be eligible for school services and supports.

Like many parents she talks to, Simpson said state-accredited day services are rare and waiting lists can be years long.

“Children lose learning, maintenance and connectivity within six months of leaving the system,” Simpson said.

That’s why she created Post 22.

The day program currently serves 12 adults with developmental delays and will soon include her son. Clients gather in the morning after their parents or guardians drop them off, review their schedules, and then disperse to community placements. They work at Cold Harbor Brewing, Classique Consignments, Sugar Shack, and even Amazon.

Post 22 has over five dozen sponsors and over a dozen sponsored internships.

Adults in the program complete internships, return to the center around 2 p.m. for refreshments and a review of the day, and are then picked up by their parent or guardian.

The center is located in the revitalized Bay State Commons shopping center on Union Street in Westborough. It is a spacious space occupying the second floor of a corner structure. Oversized windows let in light and illuminate the open floor plan, which has enough space to accommodate a Ben’s Beans coffee shop and a packaging, labeling and manufacturing science center.

A local printing house and bakery have already asked about sending work to Post 22. Computers for the center were donated by Alnylam Pharmaceuticals.

Once installed, Benjamin will work in the packaging and production center; his mother stated that sensory issues made it difficult for him to attempt an internship in the local community.

Post 22 is funded by Simpson’s salary as a rare disease consultant (she works 60 hours a week), Benjamin’s college fund, parental donations, and the kindness of community members and strangers. Simpson has two full-time employees, Kayla and Maddie Sullivan, as well as several volunteers who regularly help with programming.

A proposed regulation aimed at implementing a law passed 10 years ago allowing parents and guardians to access state funds already set aside to provide services to their dependents with developmental delays will have a public hearing on Tuesday. Simpson is concerned that the regulation could impact families’ ability to pay to attend Post 22.

Supporters question the regulation and some transparency issues about how the state calculates set-aside amounts, said Sen. Michael Moore, D-Millbury. The aim of the act was to provide carers with better options.

“The public hearing is a time for people to bring this issue to light,” Moore said. “The implementation was not consistent with the intent of the law.”

Massachusetts Alliance for the 21st^street Century Disability Policy noted on its website that residents, their families and caregivers “report that the state fails to provide important information and resources they need for self-determination through self-direction.”

Under the concept, parents and guardians would have access to saved funds and use them to pay for specialized services. In light of the lack of day services available and a waiting list of thousands for state internships, this concept could help meet the need.

The Alliance is calling on members, families and caregivers of people with developmental disabilities to attend a public hearing beginning Tuesday at 1 p.m. to discuss their needs and restrictions on access to funding. The bill was intended to enable adults to choose their own services, with the flexibility to choose tailored support and schedules.

“Parents call me every day and say their child is about to fall off a cliff,” Simpson said. She explained that parents use this phrase because that’s how they feel when their young adults are unable to access school services. About 32,000 families in Massachusetts also care for people with developmental and intellectual disabilities.

Freshman Sen. Robyn Kennedy, D-Worcester, chairwoman of the Joint Committee on Children, Families and Persons with Disabilities, is pleased that the administration is making progress in implementing the 10-year-old law. She said the state is following the rulemaking process and is looking for public feedback.

“This should have been done 10 years ago,” Kennedy said, noting that Tuesday’s hearing will give everyone a chance to comment and express concerns. Individuals who are unable to attend the 1 p.m. virtual meeting may submit a written statement.

Once the comments are processed and analyzed, the state can begin implementation.

“Self-determination is the way to go,” Kennedy said.

Endemic to the lack of accessible programs is a decimated workforce across all social service industries, Kennedy said. He hopes that the provisions in the Senate budget will solve some of the problems, provide funds to support healthcare providers, enable them to increase salaries and employ additional employees.

“Labour work has been undervalued and underpaid for too long,” Kennedy said. One provision would review existing programs to identify gaps in the system and tell lawmakers how to “eliminate” them.

Supporting employees, programs and healthcare providers is more profitable for the state in the long run. Day programs, job training, and similar programs not only offer individuals the opportunity to lead fulfilling lives, but also prevent future behavioral and physical problems.

For parents and guardians trying to navigate the system, the proposed regulations are “confusing,” Simpson said.

On Thursday, Lydia was at Post 22 in the afternoon. He works in four different internships. On Mondays he works at Classique Consignments, on Tuesdays at the Sugar Shack, on Wednesdays and Thursdays he works at the brewery, and on Fridays he makes smoothies at Vivacity Nutrition.

“I love having her here,” said Brenda Pickett, owner of Classique Consignment. “Christine is a client and she called one day and asked if I was interested in taking on an intern. Lydia helps on the desk, helping mark and fold clothes. He has good contact with customers.”

William Oliveira, managing partner of Cold Harbor Brewing, also values the contributions of his interns.

“I love Post 22,” said Oliveira, who was contacted while on vacation in Scotland.

Simpson has applied for state certification for her day program. This certificate would enable her and other parents and guardians to benefit from funds intended to support the community center. The state awards her son $35,000 a year.

While seeking accreditation, Simpson continued to expand her day center, contracting Grossman Development Group, the site’s owner, to design the space. Simpson made sure all equipment was ADA compliant and that fire alarms were specialized to make sure they didn’t trigger seizures in helpless adults.

Simpson partnered with Jill Grossman, founder of Beyond the Boundaries Club, an organization that offers recreational, fitness and lifestyle activities specifically designed for people with disabilities and open to people of all abilities. The two women will install Ben’s Beans in the Post 22 space.

Simpson is also looking for internships for her adults in life sciences and pharmacy, and is talking to a music store at the mall about jam sessions at her location.