Full Scholarships Available for Special Ed Certification at UNH

PEAL Inclusive Education Conference

Supporting Natural Support Networks

For several years, many of us have been trying to figure out how to move away from systems of support and create natural support networks for ourselves, our family members, and our friends.  I have been fortunate recently to be working with some wonderful people in my other home community in Prince Edward County, Canada around inclusion – in schools and communities.  They are a part of an organization that appears to be trying to work with people rather than provide services to clients.  I wanted to share some of their information to see what you think. 

 

From…

COMMUNITY LIVING PRINCE EDWARD

Picton, ON, Canada

Principles of Support, Standards and Best Practices – September 2009

Community Living Prince Edward’s (CLPE’s) Principles of Support represent the value base of the organization.  It is the responsibility of all employees of CLPE to adhere to and promote these principles, ensuring a high standard of respectful and professional service. 

1.      DIGNITY AND RESPECT

2.      PARTICIPATION IN THE COMMUNITY

3.      PROVIDING SUPPORT AND ASSISTANCE

4.      ENHANCING PEOPLE’S RIGHTS

5.      PLANNING WITH PEOPLE

6.      PROMOTING THE DEVELOPMENT AND GROWTH OF PEOPLE

7.      SUPPORTING NATURAL SUPPORT NETWORKS:

      Natural Support Networks are the people involved in a person’s life who have a   lifelong commitment to them, inclusive of family, friends, spouses, partners, and community connections. 

      The involvement of a natural support network is seen as an integral part of the organization’s Mission and Values, in keeping with our principles concerning health and wellness for all people.  Natural Support Networks reduce a person’s reliance on paid employee’s as well as their vulnerability of abuse, neglect, mistreatment, and exploitation. 

Standards for Natural Support Networks

1. People will determine who is important to them and who they want in their lives.
2. People will determine what they want their natural support network relationships to look like.
3. People will take the lead role in developing/maintaining their relationships.
4. People will have a circle of natural support networks that are not paid staff. 
5. People will have action statements included in their plans that foster and nurture natural support networks.
6. Staff will be knowledgeable about the natural support networks that people have and support people in enhancing and maintaining these networks. 

Best Practices for Natural Support Networks

• We encourage and support people to make phone calls, write letters & emails, and visit friends and relatives.
• We keep a written record of people’s natural support networks in their files and document all communication in their personal binders.
• We respect a person’s privacy and only provide support when necessary.
• We ensure that where people have family involvement, purposeful plans to get together are made based on the choices of the person. 
• We ensure that where people have reciprocal relationships with others that are part of their natural support network.
• We support people to send cards, flowers, purchase gifts, etc. to their natural support networks when celebrating significant events (e.g. birthdays, anniversaries, Mothers Day, etc.) based on their personal preference.
• We support people to use resources such as family trees, genealogy, internet, CAS, etc. to reconnect and find family and friends if they are interested to do so.
• We support people to use resources to mediate unresolved conflict with family or friends that may be presenting a barrier for developing relationships.
• We support people to remember people that were important in their life i.e. memorials in the paper, pictures, memory boxes, visiting gravesites, DVD’s, etc.
• We ensure people are aware of and support people to connect with community resources and support when they are involved in unsafe relationships i.e. Counseling, Alternatives, Al-anon, etc. 

It’s Possible to Open Doors that Allow People to Step Through into Community

I thank the Ohio TASH board members for a lively, focused meeting in Westerville. I appreciated the conversation about two faces of the question: Where do people belong, if they happen to have a disability? On the one hand, we wondered together how we can support full community presence and participation by people with disabilities. One answer was the upcoming event in southwest Ohio featuring Al Etmanski of PLAN, described elsewhere in this blog.

While “systems” are more likely to offer people with disabilities places in segregated, congregate settings like sheltered workshops and group homes, I was reminded recently that, while systems don’t create community life for the people they support, sometimes it’s possible to open doors that allow people to step through into community. I had asked service coordinators I work with to write a little about situations they have seen over the past year or so in which a person who uses our system improved their quality of life. I read about a young woman who returned to her home community, started college, began making independent trips to the local public library, and reconnected with her family. I also read about a child who attended his local public school for the first time, after experiencing segregated education. The cloud around these silver linings is that these young people had to experience segregation at all.

Most often what the system offers people is a place in a “program” where community participation consists of “outings”, like a regular trip to the mall with a group from the same program. I think of these places as “partial institutionalization”, similar in to the “partial hospitalization” program offered by the mental health center where I worked many years ago, which gave people with psychiatric conditions who were able to live outside a hospital setting a hospital-like place to spend their days. Now, in the county where I live and work, people eligible for MRDD services ride a bus every weekday to a place where they, and more than 200 others, spend the day in a kind of “partial institutionalization”. It doesn’t provide a living wage, and it’s not my idea of community life. At best, it offers something to do.

The good news on the other side of the question about where people belong is that state-operated developmental centers in Ohio now provide housing and services for “only” about 1700 people, down from around 10,000 at their peak. That relatively good news is tempered by the fact that several thousand Ohioans live in private facilities that often aren’t any closer to community life than public centers. Ohio relies heavily on private facilities, and unfortunately people who live there can’t take the money and simply buy different services. That money belongs to the facility where they live. A quick look at other states shows that it’s possible to do without these facilities, both private and public. Michigan, for example, has fewer than 200 people living in public institutions. It took a state budget crisis and a 20-year-old lawsuit against the state to get Ohio to help people leave public institutions. What would it take for us to learn to live without institutions altogether?

I’m afraid that as long as institutions — public developmental centers, private facilities, segregated schools and county-operated sheltered workshops — exist, they will continue to teach people in our communities that “special people” belong in “special places” where specialists give them “special help”. That lesson is the exact opposite of the beliefs that could lead us to real deinstitutionalization: Everyone has gifts to give. Our communities need the gifts that people with disabilities bring and the gifts that they release in others. We can learn to support people to participate in community life, no matter how severe the impacts of their disabilities. Until we do so, the fabric of our communities will be torn and weaker than it could be. What it takes to get started is the belief that inclusion is possible and the will to begin.

Leah Holden

Inclusion is Possible.

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) – The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

Continue reading at Autistic Self Advocacy Network, SW Ohio

Join Us as We Learn About Social Circles and Networks

A Circle — It’s Simple, Really

Loving, caring relationships are the key to a good life. A person’s well-being is intertwined with the relationships he or she creates. Most of us cannot imagine a life without someone with whom to share our closest thoughts, dreams, and fears. Yet the truth is that many people—including many with disabilities—are often lonely, and the most significant disabling condition they face is their isolation.

Adapted from “Weaving the Ties that Bind”

PLAN Institute for Caring Citizenship

Loneliness is the only real disability.

David Pitonyak

Most of us know that isolation is both uncomfortable and dangerous. Bad things are more likely to happen to someone who’s disconnected from other people. And, anyway, most people long for community—for the richness of connection with others. Most of the stories we tell each other and most of the celebrations in which we take part are about the vibrancy of our relationships with other people.

So, we need to act against the isolation that people with disabilities experience. We need to invest our whole selves in building lives-of-connection with and for them. We need to do this on purpose.

Luckily, others have taught us about a simple and familiar image that helps us try to build relationship-networks for others. That image is the CIRCLE. Circles join things together. They include. All right, they can exclude too, but we’re not going to use them that way.

When we build a circle for someone who’s been isolated or who hasn’t had enough connections in his or her life, we do four related things:

1. We try to get to know the person as well as we can—what interests or excites this person? What makes or might make life rich for her? Who is already likely to have some sort of connection with him?

2. We look in communities for places and, more important, people whose excitements and interests match those of the person with whom we’re circle-building.

3. We ask. We invite others to join in the effort to bring the person out of isolation—to make her or his own space with the rest of us. We do this intentionally, consciously. The experience of others is that many people say “Yes” to this kind of invitation.

4. We work to keep circles (also called “social networks”) active and sustained over time.

A few Southwest Ohio citizens have joined together to learn more about how social networks/circles can be created, to spread the word about how important such circles are, and perhaps to create a way for circle-building to become a part of our communities’ lives. We’re arranging for Al Etmanski, a founder of PLAN (Planned LIfetime Advocacy Network) of British Columbia, to spend a few days in Butler and Hamilton Counties, November 12, 13, 1nd 14, 2008. Please save these dates for good listening and conversation about how to relieve isolation and loneliness.

Jack Pealer

People Have Names

A few months ago I wrote a “letter to the editor” to the New York Times. Not surprisingly, it was not published (the Times must get thousands of letters each day). So, I thought I’d post it here. The piece I responded to was about the process of replacing numbers with people’s names on grave markers in an institutional cemetery.

Peter Applebome applauds the replacement of numbers on grave-markers at Letchworth Village with the names of people buried there. (“Giving Names to Souls Forgotten No Longer,” December 13, 2007) An error begs to be set right. The article portrays institutional living for people with disabilities as “a long-gone world,” as “a world designed to be as distant as the stars.” The era of institutions is still with us. Institutions are smaller now. Maybe some of them are cleaner. Likely they are more hidden from us because they are or look like nursing homes. In them the barren way of living usual at Letchworth Village continues–in New York, in Ohio where I live, and in other US communities.

When we honor the names and lives of those whose graves have earlier borne only numbers, let’s not forget people in institutions now whose lives remain unknown to their fellow citizens.

Jack Pealer

Quite a week

On Monday night Renate and I listened to Jonathan Mooney, at the College of Mount St. Joseph, as he analyzed and often skewered institutions–especially schools–for their adherence to the “tyranny of normalcy.”  On Wednesday we went to Cincinnati’s Mercantile Library to hear Anne Burleigh deliver the “Founders’ Day” lecture on “Wendell Berry and Membership.”  Mooney drew a picture, from his own experience, of a student with disabilities being searched out by schools and then singled out, day after day, year after year, with the clear intention of spinning that student right out of “normal” society.  He concluded with an appeal that we recognize “disability” as part of the human fabric, part of the diverse community. 

Wendell Berry doesn’t write much about “disability,” but he does hope for (as he brings to life in narrative and dialogue) a community where everybody belongs… a locality where the members of that local community are bound together by mutual knowledge, interests, and faithfulness to each other and to the land.  Anne Burleigh said that what Berry portrays is a “little commonwealth,” a good place where everyone’s vitality is of concern to every member.  And, if every member is included, then “normalcy” no longer matters.  If all (diverse) members are important to each other… well, I suppose that Jonathan Mooney and Wendell Berry are speaking and writing toward similar hopes.

It’s been quite a week.

Jack Pealer

Link to Erin McKenzie Virtual Welcoming Space Blog

You can also find more information about the Jonathan Mooney event as well as see participants’ reflections gathered when John McKnight visited Otterbein College in October, 2007 on the Erin McKenzie Virtual Welcoming Space Blog . In their work, both draw attention to discovering the capacity of each person to build community rather than labeling or obsessing on perceived deficits and needs.

You Won’t Want to Miss This : Jonathan Mooney is Coming to Ohio – April 13 and 14, 2008

Jonathan Mooney – The Short Bus, A Journey Beyond Normal

During the summer of 2002, Jonathan Mooney bought an old short school bus – the kind that transports students in many school districts to special education classes—and converted it into an RV. For four months, he drove 35,000 miles through 45 states to explore disability culture in America. What surprised him was that this journey led him straight to the myth of normalcy. Jonathan, like many labeled abnormal, spent his life chasing that myth before his trip. But he learned that people with disabilities make up a nation-wide movement that actively resists the constraint of normalcy for all of us. In Jonathan’s presentation he brings to life some of the individuals with disabilities who he encountered on his trip and profiled for his book. Jonathan shows how schools, institutions, and public policy enforce normalcy and encourages his audience to examine and challenge common notions of disability.