Frontline Initiative

When I was asked to write a few words about building an alliance with the caregivers who are now a part of my son’s life, it forced me to give my thoughts real words. Some of these words don’t look so nice! It makes me realize how important this relationship has to be for Scott to be successful in his new home. 

The words that rise in my mind regarding direct-care staff are dedicated, caring, underpaid, jealous, wary, hard-working, mistrustful, over-reacting, trusting, no common sense, and under-trained. Doesn’t this list sound contradictory? It tells of my admiration for Scott’s staff, but also my motherly instinct of not being comfortable with him being out from under my wing. 

What can and should parents do to help make sure people with mental retardation who live in community settings are successful? We must continually voice our concerns in a positive manner. We must fight for increased salaries for direct care staff by lobbying legislators and raising the status of these positions. We need to insist on quality being the norm, not just rule or regulation compliance standards driving the system. Lastly, we need to advocate for better training to help staff recognize the unique personalities and challenges our sons and daughters present.

The current direct care staff turnover rate is appalling. How can Scott, or anyone, be expected to lead a normal life when they never know who may be there when they wake up or come home from work? He’s expected to accept whomever comes through his door. This constant turnover causes problems for everyone involved. Is it the pressure of the job, low wages, lack of good training, or all of the above? Whatever it is, we must work together to break this cycle.

 By forming coalitions and alliances, we can share our concerns, victories. We must be more aware of different perspectives when coming to agreement on what’s in the best interest of the individual. Parents will fight hard to achieve the best services because they have a vested interest in the outcome. We want stable, well-trained, well paid, happy staff working with our family members and promise to work hard to achieve that end.