Freedom

• March 16th, 2011

“Freedom is not worth having if it does not connote freedom to err. It passes my comprehension how human beings, be they ever so experienced and able, can delight in depriving other human beings of that precious right.”
- Mahatma Gandhi

Long ago a professor of mine told me that true learning comes from mistakes not success. I am sure as you read this you are nodding your head in agreement as it has been said in so many ways and by so many others that it seems like a given truth, but not always. Well meaning professionals, loving family members, and over protective rules and regulations too often hamper a person with disabilities experiencing the freedom to learn from a mistake. Most of the time this is because all potential or actual mistakes somehow get aligned and associated with the disability itself, rather than the art of growing older and being exposed to new opportunities and challenges. It’s an important distinction and one that when overlooked reduces the person to their label versus their potential.

Long ago on a winter’s morning when I was providing direct support services to people with disabilities a particular woman waved goodbye to me as she set off for her job. I saw she had no coat on and mentioned that she might want to go back upstairs and get one. She looked at me and smiled and said “no thanks” and continued out the door. I followed her out and this time I really insisted she get a coat since we were now both standing in the freezing cold there was no doubt that a coat was needed, heck gloves and a scarf too in my opinion. She politely and a bit more firmly declined my request, which I am sure was bordering on a directive when the city bus pulled up and she waved without turning around and hopped on board. Now years later I can still remember how upset I was that she refused to get a coat, but unlike then, today I understand much better why.

It’s easy to say that you respect someone’s choice and right to direct his or her own life but to do it really well requires a lot of learning. Learning to separate yourself and what you want is the most difficult, especially if you are someone paid to support the person. All kinds of things get in the way as you wonder what will people think of my work and my professionalism, what will they think of me, if someone is not dressed for the weather? How will people react when she shows up not wearing a coat, will they judge without even knowing the circumstances, what if someone from the State or her case manager visits her workplace today and sees she came with no coat, will my agency get in trouble, even worse what if her Mom meets her after work as she often does and sees she left without a coat, will she think I don’t care for her daughter and on and on. Unfortunately people who assist people with disabilities are wrongly blamed, judged and chastised under similar circumstances as if respecting someone’s choice is only an option when everyone agrees with the choice. This is not life and it is certainly not the freedom to learn.

I never received an explanation from the person I supported as to why she did not wear a coat that day, the only thing she said to me when she got home was “Boy it was cold today, if its like this tomorrow I’ll need my coat”.

Farewell Mrs. Shriver

• August 11th, 2009

I will never forget that day in 1995 that over the telephone intercom I heard “Eunice Shriver on line 2 for you) I stared at the phone dumbfounded and like a dream when I picked it up and said this is Lynne I was still not sure who was on the other end, could it really be THE Eunice Shriver? Sister to President Kennedy, champion of Special Olympics and sage founder and director of The Kennedy Foundation?? The first words out of her mouth with that clipped Boston accent assured me that yes, this was Eunice Shriver and she was calling me!

Her call was to tell me I had been selected to receive the prestigious Joseph P Kennedy award for leadership. I was to receive the award at the United Nations where her daughter, Maria would host the ceremony. What a wonderful gift to Hope House Foundation, we were being honored by the Kennedy Foundation for having the courage and determination to close all our group homes and support people living in their own home. The recognition felt great and the honor of being selected still resonates today.

At the ceremony she was gracious, opinionated but most of all totally focused on what she wanted to see for people with disabilities, a life of inclusion…..her passion and her influence set a generation moving in that direction. Rest in peace Mrs. Shriver and I as well as so many others will continue your mission

The Art of Hope

• April 28th, 2009

The Art of Hope

Over twenty-five years ago the Ghent Arts Show, conceived by and benefiting the Norfolk Free Clinic was the premier outdoor show of our area. The funds raised from this event were a significant part of the budget the clinic used to provide medical treatment for those who could not afford it. The show was not only popular but served as a spring celebration for the Ghent community. Held each Mother’s Day weekend I can recall always being torn about traveling out of town to see my Mom versus staying in the neighborhood and going to the art show. More times than not I split my time between the two. In those days the Ghent community was quite different than it is today and much of the renovation and building of more upscale housing was still very far out on the horizon. The Ghent Arts Show truly reflected the community and the Free Clinic operated just around the corner. The artists, musicians, visitors as well as the neighborhood embraced the show and as I recall understood the importance of the event to sustainability of the Norfolk Free Clinic.

Around 1983 there was a huge buzz around the city about the opening of Waterside and the newly formed park that would lie adjacent to this “festival marketplace”, everyone was excited. The vision for the park area included art shows, music events and so much more. Harbourfest would take on an entirely different feel and we the citizens of this city would have a place to call our own. Around this time the Free Clinic was going through its own changes and would within the year relinquish the show to another local not for profit. So, when the City approached them about moving the show to Town Point Park where they would have a larger space with a beautiful view of the Elizabeth River they said yes! The organizers of the show saw the potential to attract many more visitors and to increase their fund raising as alcohol sales would be allowed, something that never seemed to fit within the serene and intimate surroundings of Stockley Gardens.

The decision was made to move the Ghent Arts Show to Waterside, it would still be on Mother’s Day weekend and still carry the same name, the only thing left to do was inform the artists of their new and improved location. I guess no one really thought there might be differing opinions among the artists and the community members of Ghent but of course there were.

A small band of artists and community members began an informal effort to block the show from moving to Waterside. They held meetings, created buttons that bore the slogan “Keep it in Ghent” and sought press coverage of their opposition to the plan. At one of their first meetings a staff member of Hope House Foundation was present and the seeds for starting another outdoor festival were planted. The idea presented to Hope House Foundation was that we would create the alternative show, keep it in Stockley Gardens, hold it the weekend after Mothers Day and most importantly maintain the neighborly culture of the event. The first Stockley Gardens Arts Festival was held in May of 1984. We had about 30 artists, a few bands and loads of optimism. We didn’t make much money, but we did make a statement. Our entire mission was about inclusion and this action represented all of what it meant to us.

It seemed then as it does now that we did the right thing. We were responding to our community not only because this type of event was valued but also we at Hope House were not separate, this community included us. At one time we operated three out of our four group homes in Ghent. We found the neighborhood to be welcoming and open to people with disabilities, and even now after closing all of our group homes and supporting people in living in their own apartments we still find this to be a place that embraces diversity.

The success of the Spring show took a few years and led to the creation of the Fall Stockley Gardens Arts Festival and again this decision was made though collaboration with the artists who explained to us that the outdoor artist circuit would be coming to a close mid October and they knew of no better place to end it than where they began, in Ghent and in this park.

How fitting that a small group of people wanted their opinions and voices heard and that it was us, at Hope House that listened. It’s the most important aspect of the work we do with people we support, the art of listening. Listening for the subtle messages that may be expressed in a quick expression or movement to the large pronouncements of dreams and ambitions. It’s fairly easy to “hear” someone, but to understand a person only listening really works which requires the opening of one’s heart to another.

The Ghent Arts Festival is long gone yet Stockley Gardens Arts Festival continues to hold a vibrant place in the heart of Ghent. One of the ongoing jokes we hear is that no one really knows who puts on the festival or why, well now you do.

Please join our organization as we celebrate this 25th year anniversary of an arts festival that believed in itself and knew it belonged in its own neighborhood, and with the help of friends, patrons and supporters such as you this was achieved beyond anything that was imagined a quarter of a century ago.

The process may be a little different for people with disabilities to have the same kind of achievement but maybe the ingredients are exactly the same.

Relationships of Hope

• January 9th, 2009

The Czech writer and politician Vaclav Havel said, “hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out”. The disability system and the various components of which people Hope House supports must interact with holds hope that things will go well yet too often making sense of the outcomes is far too challenging. A recent example of this was Governor Kaine’s budget proposal that recommends the closing of Southeastern Virginia Training Center, a large congregate setting for approximately 185 people with disabilities located in Chesapeake. On the surface it offers the opportunity for people to relocate to smaller facilities or ideally their own home, this is a good thing that offers a great deal of hope. The closure of large facilities have been pursued by states across our nation for over 10 years or more, and to be fair the primary motivation of the decision makers has been in the interest of those confined to such facilities, but is that true here in Virginia? The motivation appears to be connected to money. For years many disability associations and national groups have called on states to pursue community services and not institutional care, however Virginia has remained steadfast in its support of institutions for those with disabilities and up to this point has not closed one. That may be about to change. Some would say so what, as long as we move forward with more progressive and state of the art services then what does it matter if we close institutions because of money or because it is the right thing to do by people with disabilities. I disagree. I think the only way any transformation of services makes sense is when the biggest stakeholder, the person with the disability is the reason for the change. Only then can we be assured that we not only do the right thing but we also do it the right way. I have met many people living in institutions who given a chance would be happier and have more control over their lives in a different setting, preferably their own home. But what about the relationships that exist between people with disabilities and those that have assisted and supported them for years, how does such a right and bold move affect these? I suspect the budget plan does not address this, yet it is more than likely to hold the greatest impact of this change. In order for this closure or any more like it to be successful and meaningful it must put at the forefront the relationships that have been formed. Staff members develop friendships with those they work for, just like we do. We must insure these are as valued as the money that motivates the decision makers.

At Hope House Foundation we place a high regard on relationships, not only among our board of directors, staff and those we support but also with our community. If someone told me tomorrow that Hope House would be located to say, New Jersey, what would become of this agency? We would be a shell of what we once were, because the tapestry and fabric within this organization is interwoven and sewed together by the people that care about us, without them, Hope House is not Hope House. We would lack the meaning not to mention enthusiasm necessary to continue our journey in the same way. You cannot replace 30 years of building friendships, creating a home, and most importantly understanding about who you are and what you want to become very easily…. if at all. Things that make sense are trust, love, support and the uniqueness of each relationship we have and ever will have. I suspect if you are reading this then you too have a relationship with this organization, maybe its been ages since we have seen one another or just yesterday, all are important to us and shape who we are and who we want to become.

So yes Virginia, do continue this effort to put large congregate institutions in our past, where they belong, but not the people who have formed strong ties and irreplaceable friendships, hold them scared and important because in doing so we will create hope with meaning.

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.