The Boston Globe: 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.
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