"While Others Play...." Letter to the Editor

Thought I'd share this Letter to the Editor in the Indy Star about the Medicaid wait list. It is written by Darrell V. Poer of Nashville, In.

http://blogs.indystar.com/letters/2011/12/29/while-others-play-disabled-hoosiers-wait/

The Arc of Indiana's 2011 Conference & Appreciation Luncheon

We are living in times of great economic uncertainty. People are facing unprecedented challenges not seen in several decades. In Indiana, over 20,000 individuals with intellectual & developmental disabilities are on a wait list for critical services. That wait list is well over a decade long. A person with ID/DD who applies for services today will most likely not eligible until the year 2022 or beyond. Most of those currently receiving services through the Medicaid Waiver Program have seen their budgets cut significantly, often resulting in a loss of important services. Provider agencies face an incredibly difficult balancing act, struggling to maintain quality services and financial solvency.

On Tuesday of this week I had the privilege of attending The Arc of Indiana's 2011 Conference & Appreciation Luncheon. Simply put, the staff at The Arc of Indiana are some of finest folks I have have come to know. They are smart, creative, progressive, and forward-thinking. At this year's conference they unveiled the transformational plan, "Blueprint for Change," the next step in the Pathways to Empowerment Campaign. The "Blueprint for Change" is the result of several months of hard work. The Arc of Indiana did a marvelous job of bringing together leaders in the field of intellectual/developmental disabilities (across Indiana and the country). This resulted in the formulation of five key principals that serve to transform an outdated and ineffective service model. The Arc also conducted forums across Indiana with people with disabilities & their families to gather their input on these key principals.

The "Blueprint for Change" is based on the notion that it is possible to build a better world for those with intellectual and developmental disabilities, in spite of the tough times we're living in. We can do better. I encourage you to check out The Arc of Indiana's Blueprint for Change Report to learn more. Change is not necessarily an easy thing. But anything worth doing usually isn't.

Having worked in this field for almost 25 years, I have seen a lot of things come and go. In today's world it's so easy to be overwhelmed, frustrated, and even angry at the inequality and unmet needs of some of our most vulnerable citizens, many of whom are often not able to speak for themselves. I left the conference Tuesday motivated, encouraged, and empowered. Yes, we can, and will do better.

Everyone has a story

As I write this, I am sitting in my favorite coffee shop (which, incidentally, offers free wifi). I have put off writing a new blog post due to time constraints, and decided to make a valiant effort this morning at coming up with something to write about. But being a people-watcher, I become distracted as I observe the various patrons, in search of their particular caffeine-fueled potions, drift in and out of this fine establishment known for it's rather strong coffee.

A few of them I know. Many of them I recognize because they are frequent visitors at this time of day. And there are several I don't know at all. They all have lives they're living, and this particular moment is just a snippet of their day. Some are on their way to their offices or various places of employment. Others are students trying to ease into their day that will be filled with lectures, discussions and lots of reading. There are the occasional retirees who leisurely sit and talk. I recognize a local pastor who has brought his young daughter in for a hot chocolate, and another young professional-looking man and woman who appear to be meeting about business over coffee. At another table a couple of ladies are having a lively discussion about work and their children. A thinly-built, middle-aged, well dressed gentleman is sitting alone at a table near a sun-drenched window, pensively sipping from his beverage, seemingly in deep thought about something miles away. University faculty and local high school teachers filter in and out, warmly greeting their peers.

Each of these folks have a story. Each of them are living their lives, whether or not they are consciously aware of it. John Lennon once said, "Life is what happens while we're busy making other plans." It's a fun and curious thing to guess at who these people are, and I wonder about their real-life stories. They are all at different stages of their lives. Many, I am sure, are excited about their futures, careers, love interests and growing families. A few are enjoying their golden years, taking the time to catch up on old friendships and the things that a former busy work life made difficult. Some are undoubtedly carrying around the burdens of life, their smiles masking their true selves.

In my professional life, I meet with families and individuals that have real life stories that I get to hear. Many of them have stories that are incredibly heart-wrenching. I have talked with elderly moms and dads who have raised their child who have significant disabilities, and now are no longer able to care for them. I regularly receive calls from families who need help for a loved one that needs intensive assistance. I've talked to parents who have had to quit their jobs to be their child's primary caregiver. There are some individuals who have no one. And then there are those who have fallen through the cracks of our society, some of whom have been involved in tragic situations.

We are living in tough times. It's hard to ignore the dismal reality. A bad recession and a struggling economy have created pretty bleak outcomes for many. Our elected representatives and leaders in government are quick to remind us of this austerity, lecturing the masses on the scarcity of resources. As such, I get to be the bearer of bad news to those who often need help the most. It may be well over a decade before they will ever see the help they so desperately need. And all these folks really want is a chance for their loved ones to live their lives. Wouldn't it be great if individuals with disabilities had lives in which they were excited about their futures, careers, love interests, and whatever else that may be important to them?

Everyone has a story. Some are just a little more difficult to hear.