Legislative leaders asked the DPC in June 2004 “What will be the ‘woodworking’ effect if we support legislation to bring people with adult onset disabilities into the state-supported service networks”?
The DPC response at the time was two-fold. One, our immediate answer, was to say we believe that service needs to keep people at home were primarily information & referral, limited case management, and making services generally more available. We pointed out that many of these families had working spouses and proving home and community based services was good economic development policy from a tax revenue perspective.
Our second response was to work with legislators to secure an appropriation to give the Massachusetts Department of Public Health resources to conduct a study of the needs of adults with disabilities and their caregivers. This report, Study of the Unmet Needs of Adults with Disabilities in Massachusetts, 2007 was released in July 2008 and provides some confirmation of DPC assumptions.
Case Management: “There appears to be a fairly high need for case management kinds of services, including help finding services (20%), help keeping track of services (20%), advice about eligibility for public benefit programs (18%), and help finding caregivers to help at home” (p.iii)
Information: “About one-third of respondents (34%) reported that they wanted to get information about services for people with a health problem or disability but did not know where to get it.” (p.iv.)
- 61% receive no in-home help at all
- Of the 39% who receive help, 32% get informal care with % getting paid care
- Only 7% receiving “No Care” said they needed help with health care, personal care, or tasks of daily living
- One-third receiving help reported needing additional assistance
- (15%).One third described their health a “fair” or “poor”.
- Housework, shopping, light housekeeping, & meal preparation are the areas most respondents reported needing more help
Economic Impacts
- Fifty-one percent (51%) reported working at a job for pay.
- 11% reported needing assistive technology equipment but couldn’t afford it
- Only 14% caregivers reported Respondents received professional help
- 76% of the care givers live with the Respondent for whom they provide care
- 26% of care givers provide assistance for more than one person
- No caregivers tried to get professional help, but did look for more informal help from family
Copies of each report may be downloaded with the links below.
Adult Onset Reports
Adult Onset Disability Report 2008
Caregiver Report 2008