Family Caregiver Tip For Success

Family caregivers are vital partners advocating for their family members with IDD to maintain well-being and to achieve maximum potential.

Williamson (2016) completed research detailing the family caregiver's role in Long Term Services and Supports (LTSS) with individuals diagnosed with IDD and the best practices needed to ensure success.

Advocacy Responsibilities Are Extremely Important

Family caregiver need to spend time learning the system to be an advocate for their loved one because individual with IDD experienced better outcomes when family caregivers had a better understanding of the provided supports.

According to one family caregiver,“You have to devote yourself to maintaining the plan, to keeping up with service definitions, to learning a whole new language, and to managing a staff of people to be successful and to ensure the individuals quality of life does not suffer.”Families also described their family member with IDD experiencing better outcomes because the caregiver felt supported in their efforts to help their loved one.

Access to Services: This Really Helps

According to one family caregiver,"You know, there's this money here,’ … that has always been helpful but was never something I could depend on because I wasn't really offered a whole lot.”Additionally, “Even though you have a person centered plan which clearly, justifies why we need this amount of community living staff hours and Respite based on what has worked for the family, when they cut 70% of the time allowed, this significantly impacts my daughters day‐to‐day ability to get out.

Case Manager Retention

When caseworkers leave so goes the advocacy piece.

According to one family caregiver, “When the money paid to these workers is less … there is usually a mass exodus of highly‐skilled, experienced people who had been in the system as support coordinators … They all left … so the ability for the support coordinator to really be a social worker for that family is pretty nil.” Stability is indeed important to a family caregiver and this is needed to ensure success with provider care.

Keep the Faith

These are just a few of the many things that family caregivers can do to ensure that the person-directed objectives are met and the health and wellness of the individual served is maintained . All of which are equally important for the family caregiver to achieve success.