Leo’s Letter: Squeezed!

Released this week, FINDS 2017 is a report on the status of 3,398 caregivers (majority are parents) who care for a family member with an intellectual or developmental disability. The Family and Individual Needs for Disability Supports Community Report is a collaborative effort between The Arc and the Institute for Community Integration at the University of Minnesota. Some key findings include:

  1. Families provide an average of 57.4 hours of care each week
  2. Addressing health is a challenge as a high percentage of caregivers reported extreme stress and a lack of attention to their own health needs
  3. Workforce participation is affected with most noting impact on hours (leaving early, arriving late) with 33% declining promotions

At the same time, both families and agencies struggle to find direct support staff (DSPs) who can assist. At a congressional hearing held this spring, witnesses testified that the number of DSPs is dropping in part because the “DSP wage scale is low, and career paths do not exist. The average wage [nationally] is $10.72 per hour.” The witnesses also noted that more than one-third of DSPs are uninsured and nearly one-quarter qualify for Medicaid. Massachusetts’ John Butterworth of Institute at Community Inclusion at UMASS Boston was one of those who testified along with other experts.

We find ourselves squeezed by the lack of access to services for some and an insufficient workforce for many. All this adds up to people with disabilities not receiving the assistance which they require while family members are stretched to the limit. There are two ways out of this squeeze: committing to a significant investment to develop an adequate workforce; and, transforming our system of support with a focus on self-direction, family support, employment services, transportation, and technology. If successful, the transformation will slow the rise of the costs of services which will help pay for the investment needed.

It will take all our will and planning to achieve this goal. And it’s time.





Leo V. Sarkissian
Executive Director

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