By, Randy & Michael Bolton

First there have been no increases for agencies for over 10 years.  In addition, now there were recently additional cuts to the IDD field with more coming as early as Oct 1.  Covid-19 is still raging and agencies are being asked to be creative in their approach to programming.  There is a need to improve HVAC systems, increased cleaning protocols and the need for PPE, all costing more money, not to mention the issues of retaining staff or attracting new people at low wages.

How are agencies supposed to do that?   Wil they have to decrease their DH or other day program capacities?  What about transporting individuals with the new guidelines for 50% capacity on buses?  Again these increase costs.

Residential issues also abound.  With the edict that there be no more than 4 individuals in a residence it would mean more residences with more staff which costs more money, not to mention that some individuals/families want the CHOICE to live with more than 3 other people. Staffing has the same issues as with DH except here they are responsible 24/7 not 4-8 hours.  In addition, openings created due to the passing of over 400 individuals due to Covid-19 remain unfilled with the prospect of NYS NEVER allowing agencies to backfill these openings.

All of this makes me feel that our field is headed back to institutional settings.  Large facilities can house large numbers of people and decrease costs which is what is clearly already happening with the financial situation which is briefly outlined.  How else will agencies be able to operate with this draconian financial situation?

What happened to the promise NYS made to families that places like Willowbrook and Letchworth Village would be abolished forever and that IDD individuals would be cared for?  Didn’t NYS learn from the Willowbrook Consent Decree that we can never return to those days?

I lay awake at night and remember the horrendous conditions I saw and smelled when I worked at Willowbrook in 1980-1981 after it had supposedly been “cleaned up”.  The state changed the name to protect the GUILTY and now it was called SI Dev. Center.  It was still a hell hole and we sure look like we are heading back that way if these cuts keep coming.  Agencies have folded, or are having trouble meeting payroll, or paying rent/mortgage, paying for PPE, cleaning products, and on and on.

I continued to work in this field after my now 32 year old son was born with IDD.  I continued helping hundreds of people while raising my son with an expectation that the promises of Mario Cuomo would be honored.  After all, due to the then Governor, September 17, 1987 was supposed to mark the birth of a new era for New Yorkers with developmental disabilities.  As Governor Mario M. Cuomo declared, the Willowbrook State School on Staten Island “officially and forever closed.”  Does the current Gov. Cuomo need to be reminded of his father’s legacy?  Does he need to be confronted with the reality of where we are headed if these cuts continue unabated?

Is the only recourse for families the consideration of another lawsuit?  My hope and prayer is that smarter minds than I can come up with a plan that does not take out the crisis of Covid-19 with it’s unfortunate and understandable financial problems out on the backs of our most vulnerable population, the IDD Community.

History will not be kind to those in power if it comes to pass, and heaven help us and our children and family members if this ever happens.