Families are the Foundation of Community Living - What Do They Do and What Do They Need?
Monday, July 23
1:45 PM - 3:00 PM
Location: The Admiral's Quarters
Breakout Session Presenter(s)
Lynda Lahti Anderson
Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota
This presentation will share what was learned from the 2017 FINDS. The presentation will be interactive and will include focused conversation to engage participants. The focused conversation and be used to develop some ideas and action items for policies or other suggestions for formal and informal supports that may lead to better outcomes for caregivers and their families.
Focused conversations is a model of approaching challenges developed by the Institute of Cultural Affairs in Ontario. Focused conversations have a four-part structure that includes:
1)Asking objective questions that focus on data and facts;
2)Asking reflection which includes reactions to the data presented;
3)Asking for interpretation or what we can learn from the information; and,
4)Asking for decisions or what possible actions or next steps could be taken.
An estimated 7.3 million people with intellectual or other developmental disabilities (IDD) live in the United States (Larson, et al, 2018). About 1.2 million of these individuals receive formal supports through their state’s Developmental Disability agency. More than half of those receiving formal supports lived with their families. It is believed that the majority of those not in the formal service system receive supports from family members.
The Family & Individual Needs for Disability Supports survey was conducted in 2017 and was completed by more than 3,000 family caregivers. The purpose of FINDS is to understand the experiences of families who provide supports to a family member with IDD. The goal of FINDS was: to learn more about the challenges families face meeting the support needs of their family member with IDD; to better understand the economic implications of caregiving; and, to better understand the experiences and needs of caregivers to help policy makers and other support caregivers.
Results from FINDS
Family caregivers of individuals with IDD who provide supports to their family members have a different experience than do caregivers described in other surveys such as Caregiving in the U.S. Family caregivers of individuals with IDD provide more kinds of supports with greater intensity over longer periods when compared to other caregivers.
FINDS Caregivers reported a number of challenges ensuring that their family members’ support needs were met. For example, they reported that the lack of respite and challenges finding support staff were nearly universal experiences.
Caregivers reported a number of outcomes related to their caregiving responsibilities including negative effects on employment and economic outcomes, as well as high levels of stress. However, caregivers also reported a number of positive outcomes related to their experiences as caregivers including greater civic engagement and advocacy.
Data describing these caregiver experiences will serve as the background for the previously described focused conversation.