Families are overwhelmingly the primary source of support for their family member with I/DD. Nearly three quarters of people with I/DD live in the family home and, according to The Arc of the U.S.’s Family and Individual Needs for Disability Supports (FINDS) survey, most of these family caregivers provide more than 40 hours of care per week (including 40% who provide more than 80 hours of care per week). Our service system is increasingly being built around the expectation that adults with I/DD will reside in the family home.
Very little federal and state funding for persons with I/DD is committed to family support, despite increasing numbers of people with I/DD living with family for longer periods. Consequently, though family support is critical for avoiding placement in costly and inappropriate institutions for the family member with I/DD, the needed supports are frequently insufficient or unavailable.
There is no comprehensive family support system in the Pennsylvania. Philadelphia IDS can, in some circumstances, assist families through Base funded services or supports. Some people are able to get respite and other services through either the Person/Family Directed Services, Consolidated or Autism waiver.
The Arc of Philadelphia’s Position
The Arc of Philadelphia supports comprehensive family support. Family support should be available across the lifespan of Pennsylvanian’s with I/DD, involve parents, siblings and extended family and should include the following: availability of respite care, connection to respite resources, family training, peer networks/support, facilitation of person-centered planning.
What are we doing?
1 to 1 advocacy