Thursday, June 16, 2011

To Pry Off a Cap

"The good we secure for ourselves is precarious and uncertain until it is secured for all of us and incorporated into our common life.” Jane Addams

Community supports for youth and adults with disabilities have been capped  (aka, frozen)  in my state.  This means that for kids leaving school now, there is no medical assistance, no professional care of any kind, no job supports, no supported community living options, etc.  This will mean the work, social and independence gains made in school will be allowed to recede in individuals with differences.  For many families this freeze will mean economic hardship and caregiver fatigue.  It may mean households where an income must be given up to care for their youth or adult with differences and thus, reduction or loss of private health insurance.  It means no supported work options for the adult with disabilities, little chance of a wage at all, much less a living wage.  That may mean the deterioration in health for both family caregivers and the individuals with differences.  For 4 in 10 surveyed, family members will no longer be able to care for their loved one with a disability in the home.  We know that will mean a resurgence of residential care – nursing homes, institutions, known once as sanatoriums or asylums. 

Yes, let that visual sit for a moment.

Nationally, Medicaid for any vulnerable citizen is under fire.  Our children are low hanging fruit, the first to have to give when times are tight.  They are turned into pack mules for the baggage of unbalanced budgets. Economic health is expected to return, even as we tear families apart and render caregivers and individuals with differences unable to contribute to the economy as either wage-earners or consumers.  Legislators look at the varied populations and determine people with disabilities to be least matched to the value of a dollar.


It is not easy to be a hopeful parent in these darkening times.  But it’s less easy to throw in the towel.  My almost 12 year old and I discussed today’s rally and how we’d design our visual messages to augment our simple presence.  Cate asked for the job of picking out a “powerful outfit” for her almost 8 year old sister with differences.  Both my daughters and I will stand with other families today in front of our legislator’s office.  We will stand and we will clarify the definition of citizenship.

Here is our sign (log in to HP to view it).  The photo and each word were chosen with deliberation, care and intent. 

With hope.