Family Support Issues for People with Disabilities
Family Support refers to various types of support for caregivers of persons with disabilities. These include counseling, support groups, respite, training, cash assistance, and information and referral.
More than 65 million Americans provide care for a loved one who has a disability, is chronically ill, or is elderly and spend an average of 20 hours per week providing care. For caregivers of people with I/DD the levels of responsibility are not only greater, but frequently lifelong. There are approximately 2.9 million family caregivers of persons with I/DD in the U.S. According to The Arc’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). As our society continues to depend on the active engagement of family caregivers for the support of individuals with I/DD, it is essential to meet the needs of those caregivers to continue providing care in the community instead of more costly and unwanted institutions.
There is no comprehensive federal family support system in the U.S. Instead, some states provide limited family support using state general fund dollars or through Medicaid home and community-based services waivers. There also are a few programs that provide grants to states and communities for family support activities. Each has specific strengths and limitations that are described below.
Medicaid Home and Community-Based Waiver programs finance about 68% of all family support services in the United States. Despite this assistance, only 17% of families of persons with I/DD received any financial support.
The National Family Caregiver Support Program (FCSP) provides: 1) information to caregivers about available services, 2) assistance to caregivers in gaining access to the services, 3) individual counseling, 4) organization of support groups, and caregiver training, 5) respite care, and 6) supplemental services, on a limited basis. Unfortunately, eligibility is limited and the program is underfunded ($154 million in FY 2012). Parent caregivers of adult children with disabilities (aged 18-59) are not eligible for FCSP services.
The Federal Aging and Disability Resource Centers (ADRC) initiative began in 2003 with three core functions - awareness, assistance, and access. Unfortunately, the ADRC service system is focused on the aging population and not geared to people with I/DD. Of the 1.8 million contacts to ARDCs in 2010, only 3% were for persons with I/DD. ADRC staff lack training and experience working with people with I/DD and services are focused heavily on assisting clients with hospital discharge following an acute care episode.
The Lifespan Respite Care Program was created in 2006 to increase the availability and coordination of respite care services for family caregivers of individuals with disabilities, regardless of age. Unfortunately, the Lifespan Respite program has only received $2.5 million per year. The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) also included a provision to provide family support programs. However, line item funding for family supports under the DD Act first began in 2008 and funds totaled just $1.7 million.
Life-long caregiving for individuals with I/DD can have long-term negative economic impacts on families. In addition to sacrificing employment opportunities for their caregiving roles, many families incur significant expenses. In 2009, families spent an average of $6,300 on out-of-pocket family support expenses that were not reimbursed by formal programs.
Respite care is the most frequently requested type of family support. Nearly 50% of family caregivers of persons with I/DD report being dissatisfied with quality of these services, according to The Arc’s FINDS survey. Limited training and poor reimbursement rates for respite providers contribute greatly to the problem of limited quality.
There are over 860,000 caregivers of persons with I/DD over the age of 60 and this number is projected to grow substantially with the aging of the baby boom generation. People with I/DD are also living longer. As parents of individuals with I/DD age, they will require more support to be able to attend to their own needs and to continue providing care to their adult children.