The Need

Family caregivers for adults with I/DD are concerned about :

  1. The financial requirements for their loved one’s future housing and support needs.
  2. No transition plan for the time when a family can no longer provide care.
  3. The possibility of a sudden crisis causing their loved one to be placed in foster care or another unwanted setting.

As of 2016, 7.37 million people in the U.S. had an intellectual or development disability (I/DD).

Of those served by state I/DD agencies, 61% were 22 years of age or older.

Approximately 3.5 million people with I/DD currently live with a family caregiver.

Approximately 1 million family caregivers are over the age of 60.

In Delaware alone, as of FY 2013, there were approximately 3,000 adults being cared for by a caregiver over the age of 60.

The top five states in the U.S. where I/DD waiver recipients live with family members are Arizona, California, South Carolina, Ohio, and Delaware.

In the past two decades there has been a strong push for I/DD adults to live in the community. Between 1998 and 2016 waiver recipients with I/DD living in their own home increased by 129%.

Challenges to residential services

As of 2017 the national average to rent a home month was $1082/month– 69% of the average Supplemental Security Income (SSI) monthly check – making it impossible for most with I/DD to rent their own home without rental subsidies.

Staff turnover is high and the median hourly wage for home care workers (as of 2017) is just over $10  – a wage that, when adjusted for inflation, has remained virtually stagnant for the last 10 years. Most work part-time, giving them a median annual income of only $13,800.

The housing supply is not increasing with the rate of demand.

There is a higher potential for abuse and predatory behavior toward people with I/DD who live in isolated settings.

 

Sources:

(University of Minnesota 2016 Residential Information Systems Project) pg. 32

Braddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2014

State Of The States

autismspeaks.org

Weijerman , ME; de Winter, JP (December 2010) “Clinical Practice. The Care of Children With Down Syndrome” European Journal of Pediatrics 

ncbi.nlm.nih.gov “Health and disease in adults with Down syndrome” (February 2013)

Reilly, C. (October 2012). “Behavioural phenotypes and special educational needs: is aetiology important in the classroom?” Journal of Intellectual Disability Research: JIDR

Hickey F; Hickey E; Summar, KL (2012). “Medical update for children with Down syndrome for the pediatrician and family practitioner.” Advances in Pediatrics

cdc.gov

ninds.nih.gov

deptofnumbers.com

phinational.org

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