Currently I am doing research on family quality of life. When families are given no choice, when supports are taken away, when families are forced into isolation and become invisible because of their efforts to care for their adult children with complex needs, families fall apart. We need to support the family in order to support the individual. There are countless families who seem to disappear, they cannot work, they do not socialize, the lose touch with family and friends and their life is defined by their child. These families need respite and support.
Even a few hours a week which could be relied upon by a trained caregiver would be enough for some to just relax, get away and give them energy to feel alive and part of the community again. Why isn’t this happening? Why do families have to go to battle to have minimal, if any, support?
Inclusion is a delusion without support. Policymakers are forcing families into ruin by taking away choice and also denying these families support they need to survive. Our children with complex needs, both behavior and medical, do not grow out of these needs, they become invisible as they grow up and become isolated, with their families. There are very few supports in our communities able to manage a grown adult with the emotional, physical and developmental behaviors of a toddler. If there is support is that support available when and where the family needs it?
Research in the past couple of years (Journal of Intellectual Disability Research, Journal of Intellectual & Developmental Disability, Center for Health Care Strategies, Inc.,British Journal of Learning Disabilities to name a few journals with recent published research) is starting to look at family quality of life and congregate care. It is becoming more clear, especially for those with complex behavioral and medical needs, the person with the ID/DD and their family may do better, be happier and have a higher quality of life (both family and individual) when they are able to live in a supportive community of congregate type care.
Back to Caregifted – I believe this is truly a wonderful program. The one unfortunate caveat is that a prerequisite of applying is that applicants must have trustworthy caregivers available to care for their child to have a vacation. That is part of the problem – where do families get this?
Please view the trailer for the documentary Undersung