The Power of a Mom’s Love is an Op-Ed piece in The New York Times about a mom who has been tireless in her efforts to provide for her son. She has started a program called “Cultivating Dreams” which will offer people with special needs a community of their own. This will be much like an “assisted living” community for the elderly. The community residents will live freely but also work in the community – in a bakery, in the garden or other jobs which suit the residents.
I love this idea but I’m concerned about it too. Concerned because we already have many supportive communities (state operated) which are being shut down, one by one, across this nation, with the Department of Justice and “so-called” advocates such as The Arc and all it’s subsidiaries saying these supportive communities are isolating, segregated and expensive. None of these adjectives describe the supportive community which my son lives in but the “so-called” advocates do not listen to the families of the people who call these communities their homes.
Historically, it has been the changing philosophies of professionals and state agencies which have influenced decisions on how best to serve individuals with disabilities. Despite reports by professionals, program planners and “advocate” groups which embrace the increasingly accepted goal of deinstitutionalization, the families and caregivers of the individuals involved have different opinions. Yet despite the move towards self-advocacy, the parents and caregivers of this population are not heard.
The person who can not speak up for themselves as a self advocate needs people who know them well to help advocate for them. These family members and caregivers are ignored though – which means the population which can not speak or advocate for themselves is ignored. Who listens to the people who know this population best, who care for them, who know best how to support them? Apparently no one does and this population is left at the mercy of professionals, program planners and “so-called advocates” – to make decisions. This is WRONG!
One can see an example of this in a recent assessment (2010) done by the Division of Developmental Disabilities of all residents in the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) in Washington State. This assessment was the same assessment which was done for all DDD clients on the Home and Community Based Service waivers. The findings were utilized in determining the closure of one of the communities surveyed. Evidently, the choices of the families involved did not matter.
In addition to the assessment above, every year the family/guardian needs to sign a consent and is asked specifically about desires to move. It is clearly indicated that residence is strictly voluntary and the guardian could chose at any time to remove the resident from the ICF/ID which would not jeopardize the resident for eligibility with services from DDD.
From this, it is very clear that these families are choosing this supportive community – maybe it would be wise to listen to them and find out why they prefer it. Maybe the professionals, program planners, and advocates would learn something.
So, getting back to “Cultivating Dreams” – I’m very glad to see this concept heralded as a good choice for our children. I hope the dream is realized.