Washington, DC – The Arc of the United States released the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017 today. The intent of this one-of-a-kind survey, conducted by The University of Minnesota’s Institute on Community Integration in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with intellectual or other developmental disabilities (I/DD). This is the second FINDS Report that The Arc has released; the first was conducted in 2010, and released in 2011.
An estimated 7.3 million people with I/DD live in the United States, with the majority living in their family home and receiving support from a family member. The report includes survey responses from over 3,000 caregivers and provides information on the economic implications, logistical challenges, and major gaps that exist in caregiving infrastructure.
The FINDS Survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. The study revealed that:
- 80% of individuals with I/DD live with a caregiver who is their family member. Alternatively, access to affordable and accessible housing outside a family home, in a setting with adequate supports, remains a challenge for people with I/DD.
- Most caregivers (54%) reported that they did not have a plan for the future. Caregivers share a long list of concerns about what will happen to their loved one with disabilities when they are no longer able to support them. Planning ahead can help guide a person with I/DD to lead a good life as independently as possible. A plan is important throughout all stages of life and especially in the future after the parent or caregiver is no longer able to provide support.
- 50% of individuals with I/DD leave high school without a high school diploma. This is concerning because having a high school diploma is crucial in being considered in a competitive job market.
- Only a minority of individuals with I/DD are fortunate enough to be employed, and on average they work only 26 hours per two-week period. There is lack in diversity of the type of work being done; sixty percent (60%) of those employed work in retail, janitorial, landscaping, or food service jobs.
- More than 3 out of 4 survey respondents described that since becoming a caregiver they are more aware of policy issues and more involved in advocacy, including calling their legislators. Ninety-five percent (95%) say that they vote, much higher than is typical for the voting age population as a whole.
The FINDS Survey results highlight the challenges faced by caregivers in our nation. With respondents reporting an average of 57 hours of support provided to their loved one each week, 95% of caregivers reported being stressed and nearly 50% reporting being very or extremely stressed. This affects the ability of caregivers to meet their own personal needs, balance family responsibilities, and fulfill professional obligations. Almost all survey respondents who were employed reported that caregiving had a negative impact on their work, whether it was cutting back their hours, turning down promotions, taking a leave of absence, or giving up work entirely to meet the needs of their loved one.
Caregivers also reported that they would like their employers to do more to help them be successful in balancing their work and family responsibilities, such as provide medical and dental insurance, flexible spending accounts, flexible scheduling, and supportive and understanding supervisors and co-workers.
“In every aspect of life – from education, to employment, to planning for a stable future – we as a society are failing in our support of caregivers of people with disabilities and falling short of our obligation to improve the quality of life of people with disabilities. This report paints a picture of the day-to-day needs of caregivers, and should ignite action to address the gaps that stop us from achieving full inclusion of people with disabilities in the community throughout their lifetime.
“People with disabilities have an undeniable and moral right to be fully included in all aspects of society. As the largest civil rights organization for people with intellectual and developmental disabilities nationwide, we will continue our advocacy to ensure that supports are in place to promote the human and civil rights of people with disabilities.
“Too often, we in the disability community preach to the choir. This report should raise awareness and help engage new activists to our cause from all walks of life. People with disabilities in our nation have faced decades of discrimination and overcome much adversity, but we still have a long way to go before we have a truly inclusive society. The FINDS Report highlights areas we need to focus on and should serve as a rallying cry to advocates nationwide who recognize people with disabilities and their families deserve better,” says Peter V. Berns, CEO of The Arc.
About the FINDS Survey
The FINDS survey was implemented primarily using an on-line survey between January and March of 2017. The survey was also made available in English and Spanish paper versions. Caregivers who were family members or friends of people with I/DD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with I/DD was in a paid role were not included in the sample.
More than 3,000 people (3,398) met the criteria to be included in the survey and consented to participate. Caregivers were surveyed including respondents from all 50 states, DC, Puerto Rico, and Guam. The number of people responding was large and provides important information about the experiences and outcomes of family caregivers of individuals with I/DD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States.
The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.