40 Big Ideas

Summary

Family caregivers made it possible for people with disabilities to move out of institutions and into the community. They provide support for daily living, medical needs, advocacy, and much more. They need help to do this. There aren’t enough paid support workers, so family caregivers need training, resources, and emotional support. They also need ways to offset their cost of care, including being paid caregivers themselves.

Family caregivers are often the primary support for people with intellectual and other developmental disabilities (IDD) and have played a significant role in the deinstitutionalization movement that made community inclusion possible for many people with IDD.

Most people with IDD live with their family, and even if they live independently, most still need family support. Families are made of biological and chosen members, such as friends and neighbors. Family caregivers may be paid, unpaid, or both, and may provide care along with paid staff.

Family caregivers provide direct support for daily living, household maintenance, transportation, health and medical needs, communication, and advocacy. They teach important skills and provide social, emotional, behavioral, and financial support. Family caregivers coordinate services, supports, appointments, and activities. Some find, train, and manage staff. They are life coaches who encourage, support choices, and help people achieve goals. They support participation in activities and facilitate relationships to increase belonging. Families also prepare for the future when they cannot provide care.

Parents often provide care throughout their entire lives. Many family members become compound caregivers, caring for multiple people at the same time. They are pulled in many directions, making it challenging to maintain family cohesion. Family caregivers often experience high levels of stress and isolation. They may struggle with their emotional, mental, physical, social, and psychological well-being. Caregiving can also impact their finances, careers, and life satisfaction.

Family caregivers need support to fulfill their roles. They benefit from education and training to increase their knowledge and skills around services, managing behaviors, advocacy, future planning, and more. They need help coordinating activities, supports, and teams of professionals. Guidance during life transitions and navigating service systems is important. Family caregivers need respite and support to have time to do it all. Financial assistance is needed to fund services, adaptive equipment, and home modifications. They also need ways to offset their cost of care, including being paid caregivers.

Family caregivers personally benefit from social and emotional support from peers and their community. Some benefit from counseling and psychiatric services. They require support to manage their mental, physical, and spiritual well-being. The personalized supports they need change throughout their lives. Supports can be formal or informal, eligibility-based or community-based, and should be culturally specific.

When given the right support, family caregivers can gain the knowledge, skills, and resources they need to better support people with IDD. They will have greater financial stability and less material hardship. Family caregivers will experience less stress and more physical, mental, emotional, social, and spiritual well-being. People with IDD will be more able to live, work, and play in their communities. This increases their health, well-being, and quality of life. Families are also strong advocates for people with IDD. The whole family’s quality of life will improve with personalized support.

Family caregivers are an essential part of the long-term support system for people with IDD. They are needed because of the direct support workforce crisis, which includes high staff turnover and vacancies that decrease service quality. With the support of family caregivers, people with IDD are more able to be active citizens and give back to their communities through work and volunteering, which benefits us all.