At a recent meeting of the Board of Directors, we learned a bit about advocacy. Kim Dodson from The Arc of Indiana spent an informative hour showing us how we can encourage our State and National Legislators to remain engaged in issues related to persons with intellectual and developmental disabilities.
I hope we all not only learned something, but that we will put into practice the things we learned.
As an elected official, I understand the importance of listening to constituents. I understand what our elected officials in Indianapolis and Washington feel and believe when they hear from their districts about issues of importance.
I cannot emphasize enough that the issues the agency will face in the next few years – the issues that those we serve will face – are critical. The issues will include funding for services, the way in which services will be provided, the ways in which we will respect (or not respect) persons with disabilities.
I urge you to contact your legislators on issues of importance. If you know what you want to say but don’t know how, when or where to say it, contact us. We’ll point you in the right direction.
Remain engaged.
Ellen Bland is the President of the Board
In the Summer 2007 issue of inSIGHT (Arc of the US), there was an article by Judith Greenbaum highlighting the plight of a woman and her daughter. They live in Michigan and have decided to move to Maryland. The mother is aging and is concerned about the future for her daughter, who has an intellectual disability. Her oldest daughter lives in Maryland; the family agreed that she would be the one to provide support for the younger daughter.
The article noted what those of us in Indiana are all too familiar with: the dreaded waiting list. After an initial battle to determine the services available in Maryland and frustration over getting paperwork filed, she was told that her daughter would be placed on a waiting list. The daughter is an active participant in services in Michigan and is very pleased with them. Now, she faces sitting at home until she comes to the top of the Maryland waiting list. The mother’s plight is a terrible one. Should she move to Maryland to help establish her daughter in that state and have her closer to the older daughter, or should she stay in Michigan where her daughter is getting services? Of course, she could die and thereby move her daughter up on the Maryland waiting list, but what a sad commentary on our system it is that she would have to think of such a thing.
There are 15,500 people on the waiting list in Indiana. Like the lady who wants to move to Maryland, they anxiously await the day when they will receive a notice in the mail indicating they have a Medicaid Waiver slot open for them. The issue of people with intellectual disabilities languishing on waiting lists is a national travesty.
While the legislative session is over, we in Indiana must continue advocating for additional funding. The Family and Social Services Administration has talked about opening up 2,500 waiver slots, but there is no timeline and no solid commitment to do so. They voice concerns about the ability of community-based services to handle such an influx, but I can tell you that if the funds become available, we can provide the needed training and support services. Now and then, someone in Indianapolis suggests it would be better for the State of Indiana to contract out the service system, thereby doing away with or marginalizing locally managed non-profits like this one. As we advocate for increased funding for services, we must likewise make it clear that the best services are provided by organizations that are part of the local community rather than those managed by distant corporations without ties to the locality in which they operate.
It is long past the time for states all across our nation to address the issue of the waiting list. As I have said repeatedly, we will only get the needed action when we advocate loudly enough that someone finally pays attention.
Don Weikle is the Executive Director
Logansport, IN 46947
574-753-4104
Winamac, IN 46996
574-946-6188
peak@peakcommunity.com