Real Lives bill would empower people with disabilities

His real life inspired state Representative Tom Sannicandro’s Real Lives bill.

Sannicandro’s 28-year-old son, David, has Down syndrome. The Ashland lawmaker knows from personal experience how important it is to empower his son to make as many life choices as he can. From constituents, he also knows how challenging that can be, especially given a state bureaucracy that favors service providers instead of beneficiaries.

To shift the balance of power, the Real Lives bill would change the way developmental services are delivered. Individuals or their legally designated representatives — with oversight from the state — could design their own “person-centered plans” to use taxpayer money they qualify to receive. The bill also addresses the sometimes long delays that individuals experience when they are not happy or satisfied in a certain setting.

The current system leaves decisions about how money will be used and for what purpose with providers. If a specific program doesn’t work out for a particular individual, it’s difficult to get out of it. Providers are not eager to lose the revenue stream represented by an unhappy user.

If any other group were denied the right to choose the best setting for their needs, “there would be revolt,” said Sannicandro. “But for this population, somehow it’s OK.”

The state Department of Developmental Services and the Association of Developmental Disabilities Providers, along with a coalition of leading advocacy groups, back his bill. A supportive letter signed by 79 representatives, including 14 Republicans, has been sent to House Speaker Robert DeLeo; 15 senators, including 2 Republicans, signed a similar letter that was sent to Senate President Therese Murray.

The bill’s advocates are trying to win passage by July 31, when the legislative session ends. For that to happen, the bill must quickly come to the House floor for a vote. If it passes, the Senate is poised to vote for it, advocates said. Sannicandro said he also believes Governor Deval Patrick is on board; at least that’s what the governor suggested during a conversation they had when the lawmaker was still drafting the bill.

Getting the bill passed won’t be easy. It requires a commitment to deliver on behalf of Massachusetts citizens who are easily forgotten and often ignored.

The disability community does not have wealth and power behind it. Its issues are not sexy, like gambling. The cause also lacks the broad public appeal of tough-on-crime proposals, such as “three strikes” legislation.

Advocates from the disability community are ordinary citizens who are struggling to meet the real life needs of vulnerable loved ones. They represent individuals with developmental disabilities who are living with elderly caregiver parents; adults with developmental disabilities and complex medical needs; an exploding population of children on the autism spectrum; and young adults turning 22 who are transitioning out of their special education programs.

These advocates face a bureaucracy that can be tough to navigate, even for the most knowledgeable and sophisticated.

Take the experience of Ed Bielecki, state coordinator for Massachusetts Advocates Standing Strong. His autistic daughter was in a group home that wasn’t a good fit, but efforts to get her into another setting were unsuccessful

Bielecki and his wife knew the system well. “We knew who to talk to,” he said, but still, “We couldn’t get anywhere.” It took an abusive incident involving his daughter to finally give them enough leverage to find an alternative setting.

Coming up with a program better suited to her needs changed his daughter’s life, said Bielecki. It also led to better use of state money. “You’re taking taxpayer money that is already allocated for services and utilizing it in a more cost-efficient way,” he said.

But, at its heart, the Real Lives bill isn’t about money. It’s about recognizing the rights of people with disabilities to make choices about how and where to live — and not limiting them to choices made by someone else.

“Everybody has some idea of what they think is best for them,” said Sannicandro. “Some might need more help in making their decisions.” But those decisions should be theirs to make, he said.

As Sannicandro describes it, the Real Lives bill is about independence and securing basic civil rights. Surely, Beacon Hill has time for that.