The Arlington Advocate
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By Cyndi Roy/ State House News Service
Thursday, June 23, 2005

When Steve Lewis was diagnosed with the fatal neuromuscular disease known as Lou Gehrig's disease seven years ago, he didn't know where to turn.

Though his wife Martha has been able to provide most of his care at home, the Winchester, Mass. couple needs a little extra help. Through word of mouth and discussion with friends and family, they've found a personal care attendant who can give Lewis' wife a few hours of rest each week.

But as Lewis' condition progresses, he will need more consistent, dependable care from someone who is more qualified to care for patients with ALS, he told lawmakers last Wednesday, urging them to support a bill that would create a central state registry for adults with degenerative neurological diseases.

The proposal (H 2852) filed by Rep. Anne Paulsen (D-Belmont) would establish a new department of home and community-based services to be a source of information and services for adults diagnosed with ALS, multiple sclerosis, Parkinson's and other debilitating diseases.

"We're aware that the state does provide some services, but we don't know how to get them," Lewis told members of the Public Health Committee. "We have had to find (personal care attendants) through word of mouth and we pay 80 percent more" than the state pays for PCAs.

Supporters say there is a strong, clear need for the department because no current state agency or department provides the range of services and information those with the degenerative diseases need. Patients stricken with the diseases are often left with little choice, but to enter a nursing home if their families cannot devote themselves to full-time care.

"People who develop disabilities as adults end up in nursing homes and we need to do everything we can to make sure they receive care at home," said Paulsen, who represents Precincts 2 and 4 in East Arlington. "There are services that are frequently available, but nobody knows how to access them."

Bill Allan of the Disability Policy Consortium said while low-income patients get assistance from Medicaid, middle class disease-sufferers have nowhere to turn.

"The people this department would serve are not necessarily poor," Allan said. "So what, if you're not poor, you don't get the information?"

Allan said there are an estimated 10,000 people who are suffering from these diseases and aren't receiving the support they need.

Committee Co-Chairmen Sen. Susan Fargo (D-Lincoln) and Rep. Peter Koutoujian (D-Waltham) said they believe the proposal is important and is something they must address, but said they are unsure how to best meet the needs of that population.

"The testimony was certainly compelling and there certainly is a real need to address this issue, but it's a big change and it's something we're going to have to sort through," Koutoujian said.