The Inn of Inclusion

• April 11th, 2008

“A little inaccuracy sometimes saves a ton of explanation.”
- H. H. Munro (Saki) (1870-1916)

This week in the Virginian Pilot an article by Elizabeth Simpson appeared on the subject of waiting lists for Medicaid Waivers in the State of Virginia for people with disabilities. I know Elizabeth and respect her greatly. Her writing style and ability to convey complex issues in a human light is uncanny and she consistently picks up the gauntlet and writes stories most of our community rarely considers and often times don’t care about.

This one was no exception. She clearly explained the system by which people with disabilities can access services in my State and she clarified why the granting of 600 new “slots” puts little more than a small dent in the ever growing waiting list that now represents 6000 people with disabilities. In the article she clarified that if you have a label of autism or have a brain injury that no new slots are granted at all and she exposed the disparity of the system in prioritizing people’s needs based on where they live. If you are in an institution run by the State more funds are available to you as is more support, if you are living at home with your family then tough.

The only disagreement I personally had with the article was this sentence; “A Medicaid waiver would allow him to move into a group home and receive services that could provide more socialization and job skills. Ann Christie says her son is eager to move out on his own, and she’s worried he’ll lose some of his skills if he spends too much time at home.”

A Medicaid wavier would also allow her son to choose Hope House Foundation instead of living in a group home. We closed all of our group homes 17 years ago in favor of true individualized services that place the person with the disability in the “driving seat” so to speak in directing their own lives. What better way not to lose your skills than to be afforded the opportunity to live your life as an individual based in your own home versus in a group home based on labels .

So here in Virginia we have 6000 people with disabilities, not to mention their families and friends all wanting 400 passes to freedom. So the test becomes who is most needy and who has the most justifiable emergency situation. So typical of the State, crisis management. No need to be proactive, let’s just do as little as possible and only for those who are in crisis. How about the folks who as adults want to live outside their family home, or those who have ambition and want to contribute? No room at the Inn of Inclusion for them. This same approach was most striking in the aftermath of the Virginia Tech shootings. The lawmakers agreed that now it’s time to get serious about this broken and under funded mental health system. The sweeping speeches and outrage still produced so little to prop up this abysmal system.

The only way to get service in this State is to be an emergency. So pull out the sirens, get your flashing lights and move swiftly down the road of bureaucracy, because if it’s not a crisis then we need to keep doing what we have always done in the Commonwealth, as little as possible.

Chicago in Snow

• December 17th, 2007

I am in Chicago amongst a blanket of snow. This is the first time in distance memory I have seen a landscape like this so near to the 25th of December, ah the sweet warmth of southern living. No chance of blizzards of
ice and snow near my east coast abode. A scene I remember from my childhood but since growing up rarely seen or experienced in adulthood. Now while sitting in the “somewhat” warm home of my dear friend Lela and gazing out on this blinding stuff of white crisp frozen precipitation I am grateful. I am appreciative about so many people and things in my life today and it has moved me to write. Maybe that’s the holiday spirit creeping in on this recently battered soul……maybe it’s just being crystal clear about the moments or maybe it’s just the place I find myself right now. Regardless I am happy and have a sense of wonder that fits perfectly with the season.

A season of hope and adventure is what I long for and one that I most certainly want to contribute to, professionally and personally. Hope for the State of Virginia to finally make honest changes that benefit people with disabilities instead of the incessant committee studies that produce no more than rhetoric and recommendations, but rarely any action. Hope for true human rights and a system that actually understands and supports choice by the people forced to deal with a system that offers little more than a five bed group home and a day center to waste the day in. And finally hope for the thousands that sit on a waiting list year after year seeing a glimpse of the inclusion that most of us can not imagine living without.

Recently a number of people with disabilities were asked what was the single thing they would like to change about their lives……..their answer is not new but worth repetition, friendship. People in their lives who care about them…….simple and in the midst of this season of gift buying, decorations and credit extensions, this is something to put on your list that’s absolutely free, the gift of friendship, taking the step towards the reduction of loneliness, not just for people with disabilities but for all those left on the sidelines. This is an adventure worth going on……one that holds surprise and optimism, as well as good cheer. Tis the season after all.

So today with the cold and the ice I will keep my heart warm and expectant, I will anticipate the excitement of real change and I once again I will commit this soul through the uphill but worthwhile journey of being what I want from this world.

A Community Life

• August 24th, 2007

When I began my employment at Hope House Foundation many years ago I remember how exciting it was to help people leave large state institutions and move in to 8 and 10 bed group homes in the community. In those days we were so focused on getting people out of terrible places that we never thought too very much what the community would be like, we just knew it would be better….and it was. Living with 8 or 10 people was better than living with a thousand, sharing a bedroom was better than living in a dorm with a 100 others and walking to the local neighborhood store was better than being segregated on a large campus. In those days I believed being in the community was better than being excluded from it and I still do. But it’s not good enough, being in the community is vastly different than being part of the community. That’s why we decided to close all our group homes and start community involvement with living in your own home versus a facility and it worked in so many positive ways but is still was not good enough. People we support wanted friendships and opportunities to work in real jobs and not sheltered workshops. They wanted to go to school, join clubs and pursue sports activities. They wanted to travel, go to dinner and a movie, and just goof around at the beach. What people wanted that we supported boiled down to what people tend to have when they are “part” of a community.

Last year a group of us came up with the idea to focus one position within each team at Hope House on that idea, people becoming part of the community and not just living in the community. We wanted the individuals within these roles to be creative, spontaneous and with a huge capacity to help individuals form networks of friends. We call this position the Community Support Coordinator but I think most folks that we support call them their dream champions. We at Hope House have been so pleased and quite frankly humbled by the incredible success of this effort as I think you can see from the stories in this newsletter.

I believe there is a place between excluded and included that many people with disabilities live within, I also believe Hope House is not one of them because we understand our work here is not just about good services and supports but finding your dreams and having them light up who you were always meant to be.

Rules of Engagement

• August 3rd, 2007

I like rules that make sense. Rules are good for me when they are simple and voluntarily agreed to by those expected to follow them. This of course is very different than laws and regulations which are typically established without input, conversation or the slightest involvement by those they most directly affect. Rules when looked at from an artist’s perspective involve light, from an astronomer’s the earth’s rotation and from the chemist’s the certain reactions of various components when mixed together. These rules guide and predict what will happen, and they don’t tend to change. When people say “rules should be broken” I think they are really talking about laws and regulations which as we all know constantly change and often times make no sense whatsoever.

We have a new law in Virginia that punishes traffic violators who reside in this grand state at a more costly level than those that don’t. Some people think this is downright discriminatory as well as short sighted in terms of addressing the issue. In the disability community almost all the laws and regulations are discriminatory and fail to address the real issues of poverty, unemployment, lack of inclusion and choice. Not following many of the regulations in this industry actually helps people with disabilities to have better lives…go figure, but don’t get caught.

My friend and I established some rules or maybe they are just guiding principals, it’s really semantics because our rules were made together in an effort to define our behavior towards one another and at the same time make sure we achieved certain outcomes. I like them, they are exciting, loving and communicate intentions and anticipation. Having a rule about communication that is honest and clear works for me, I like being able to expect that, hell even count on it.

Sometimes rules can be healing, like a bridge that transports me from one place to another, or adventurous like a promise of fun, no matter what. Nothing wrong with those kinds of rules in my book. Some rules are just plain manners or graciousness, I like those too. I guess the real test of a rule is its ultimate motive or what the rule should accomplish, when I make rules for myself like sitting up straight and working on my posture I rarely question the motive or test its integrity, yet when I establish rules with another person I suppose motive does come up, is this controlling or freeing, confining or releasing, supportive or selfish? With my friend I did not think of these factors, never entered my mind. I think that was because I trust him and when I trust someone those things just don’t take up any space in me. It’s just distant and hard to hear noise.

So maybe we need to dump the regulations that were made for people with disabilities and not with people with disabilities, maybe we need to establish rules between people with disabilities and those they trust and just maybe we need more rules that promise love, adventure and graciousness……now that’s something I could get behind, yep no doubt that’s me in a tree.

Living Among Painted Porch Furniture

• July 8th, 2007

I painted all the chairs on my porch, well not technically, my friend Sam actually did most of the painting but I was there. It was a great day visiting with my friend and watching chipped and rusted chairs become bright and shiny, nothing like a new coat of paint to change the entire look.

I was really not interested in painting them myself, but very interested in them being painted. My friend knew this and without a lot of fuss (well maybe a bit), he set out to make it happen. We need friends like this, people who have the willingness to do something for someone without a lecture of how the person could do it themselves. Of course I knew I could paint the chairs, but the act of friendship is not something you do alone, and that is what took place on a breezy day in May.

So much of our work with people with disabilities is about what they can do for themselves, why we have devoted an entire paper industry towards proving that is all we focus on as if this progress is the only value to hold. Well I don’t agree, sometimes we need a friend who will do something just because……People with disabilities don’t have enough of those types of friends, maybe none of us do, but I’m lucky I have Sam.