PACER’s Family Advocacy and Support Training (FAST) Project provides an extensive, national report of 2400+ parents whose children had more than 300 physical, cognitive or health related disabilities.
Diana McCalment, Designs for Progress, 2012
In 2009, there were 596,000 Oklahoma citizens acting as caregivers. They provided an estimated 570,000,000 hours of care giving with an annual market value of $6,000,000,000. The economic value of each hour of care in Oklahoma was estimated at $10.44 per hour. This includes caregiving for elderly family members and for family members with intellectual disabilities.1
Long term caregiving has significant financial consequences for caregivers, particularly for women. Informal caregivers who leave the workforce when they are 50 years of age or older personally lose about $303,880over a lifetime: $115,900 in wages, $137,980 in Social Security benefits, and conservatively $50,000 in pension benefits. 1
Caregivers face the loss of income of the care recipient, loss of their own income if they reduce their work hours or leave their jobs, loss of employer-based medical benefits, shrinking of savings to pay caregiving costs, and a threat to their retirement income due to fewer contributions to pensions and other retirement vehicles.
On March 22, 2012, 6,563 people with intellectual disabilities were receiving care in a parent or relative’s home, having requested services from the Department of Human Services. Assuming each person has a caregiver, that means over 6563 Oklahomans were involved in long term caregiving for people with intellectual disabilities. 2
If the national statistics for economic impact quoted above are used, that means Oklahomans caring for people on the Waiting List loose $1,993,839,400 in wages over their lifetimes. At a 5% state income tax rate, the state of Oklahoma looses $99,691,970 in potential state tax dollars. However, those numbers are based on a person leaving the workforce at age 50. For many of the caregivers involved with people with disabilities, the age at which they left the workforce was much earlier.
Another facet of caregiving is the economic value of the service provided. If each caregiver for a person on the Waiting List provided only 40 hours of care per week, 50 weeks a year, the economic value of their caregiving would be $137,035,440 annually. Obviously, most caregivers provide the service more than 40 hours per week.
Caregiving also has a substantial impact on business. Lost productivity due to informal caregiving costs businesses $33.6 billion per year.4 These costs include those associated with replacing employees, absenteeism, workday distractions, supervisory time, and reductions in hours from full-time to part-time. The average annual cost to employers per full-time employed caregiver is $2,110.3
Additionally, recent research shows a link between employed family caregivers of older relatives and their health care costs. In this study, employers were found to be paying about 8 percent more for the health care of employees with eldercare responsibilities compared to non caregiving employees, potentially costing U.S. businesses an additional estimated $13.4 billion per year.4
Working caregivers often suffer many work-related difficulties due to their “second careers” as caregivers. Sixty-seven percent of family caregivers report conflicts between caregiving and employment, resulting in reduced work hours or unpaid leave.6
1 AARP Public Policy Institute. Valuing the Invaluable: 2011 Update: The Growing Contributions and Costs of Family Caregiving. Washington, DC.
2 www.OKWaitinglist.org: March 22, 2012 Notes from the Waiting List Meeting
3 MetLife Mature Market Institute and NAC, MetLife Caregiving Study: Productivity Losses to U.S. Business (Westport, CT: MetLife Mature Market Institute, and Bethesda, MD: NAC, 2006). The lost productivity estimates are based on the 2004 survey of U.S. caregivers conducted by NAC and AARP, Caregiving in the U.S. 2004.
4 MetLife Mature Market Institute, NAC, and University of Pittsburgh, MetLife Study of Working Caregivers and Employer Health Care Costs (Westport, CT: MetLife Mature Market Institute, February 2010).
5 Metropolitan Life Insurance Company and National Alliance for Caregiving (1997, June). The Metlife study of employer costs for working caregivers. Connecticut: Metropolitan Life Insurance Company.
6 Family Caregiver Alliance (2009). 2009 National Policy Statement. San Francisco, CA.
- Guiding truths that shape the way individuals, families and service providers interact
- Establish common ground upon which individuals, families, advocates and service providers operate
- Form the basis for program policy and practice.
WHEN WE ENGAGE WITH INDIVIDUALS AND FAMILIES WE WILL…
HONOR THEIR EXPERTISEand right to make choices that they know to be in their own best interest
RESPECT AND ACCEPT THEIR VALUESthat are based in personal preferences, cultural beliefs and life-ways
SUPPORT INDIVIDUAL AND FAMILY RELATIONSHIPS that are safe, stable and long lasting
FOCUS ON THE ENTIRE FAMILY as it is defined by the family
PROMOTE FLEXIBLE SERVICE AND FUNDING supporting individual and family control over who, what, when, where and how supports are provided
AFFIRM LIFESPAN PLANNING AND SELF-DETERMINATION that encourages decision-making and planning for independence beginning within the family when children are young, following the individual throughout their life and including aging issues
ASSURE PARTNERSHIPS WHICH ACTIVELY INCLUDE INDIVIDUALS AND FAMILIESin planning, development, implementation and evaluation of policies, practices and personal programs
PRACTICE OPEN COMMUNICATIONpromoting a clear understanding of all aspects of systems policy, procedure, practice and all other information regarding them
RECOGNIZE THE IMPORTANCE OF THE COMMUNITY, where individuals and their families belong and realize their full potential
All people need enduring, stable family and community relationships. All families need support at times in their lives to maintain these lasting relationships. Individual and family support must assist across the lifespan, supporting the child within the family and the individual reaching independence. This assistance builds on natural sources of support including extended families, friends, neighbors and community associations. The way support is provided is a reflection of what we believe about individuals and families, a way of thinking about individuals and families and a way of engaging with individuals and families.
Developed by Members of the Oklahoma Family Support Council
Endorsed By These Organizations
Center for Learning and Leadership / UCEDD
Down Syndrome Association of Central Oklahoma (DSACO)
Family Perspectives Committee of the Oklahoma Commission on Children and Youth
Mom’s Group, Tulsa Advocates for the Rights of Citizens with Developmental Disabilities
Norman Social Services Coordination Council
Oklahoma Adoption Coalition
Oklahoma Chapter – National Association of Social Workers
Oklahoma Developmental Disabilities Council
Oklahoma Family Network
Oklahoma Family Resource Coalition
Oklahoma Respite Resource Network
Oklahoma Olmstead Strategic Planning Committee
United Cerebral Palsy of Oklahoma
Woodward Chapter — People First