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The Connecting Point

Volume 3 Issue 16 November 8th, 2005

In This ISSUE:

1) Postsecondary Education Site for People with Cognitive Disabilities
2) The Special Needs Trust Administration Manual: A Guide for Trustees. 2005 Edition
3) Online Newsletter for Self-Advocates
4) Transition to Adult Health Care: A Training Guide in Two Parts
5) Keeping Consumers Needing Long Term Care in the Community and Out of Nursing Homes

Essay: An Effective Complement: Advocacy & Forgiveness
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1) Postsecondary Education Site for People with Cognitive Disabilities
Youth with intellectual disabilities have not had many chances to go to college. This is changing as individuals across the country begin to create opportunities for these youth to reap the benefits of postsecondary education. http://www.thinkcollege.net/ This website will provide information and links to anyone interested in finding out more about the possibilities. The Student friendly site explores topics such as site Things to Consider Before Deciding About College, which includes an excellent comparison chart for students http://www.thinkcollege.net/students/index.php?page=consider , Paying for College http://www.thinkcollege.net/students/index.php?page=paying , Your Rights http://www.thinkcollege.net/students/index.php?page=rights This will be a site you will want to bookmark! http://www.thinkcollege.net

2) The Special Needs Trust Administration Manual: A Guide for Trustees. 2005 Edition -
Shortly after the Special Needs Trust Administration Manual: A Guide for Trustees (People with Disabilities Press, 2004) was published, the Social Security Administration made three important changes* to the SSI program rules. These revisions became effective on January 1, 2005.

The Special Needs Trust Administration Manual: A Guide for Trustees. 2005 Edition, including the latest changes in regulations and benefits, is now available at http://www.disabilitiesbooks.com/special_needs_trust/index.html  

The changes are:

•  Clothing is no longer considered in-kind income.  Formerly, if an SSI recipient received any clothing from a third party (including a Special Needs Trust), his SSI benefit might be reduced.  This is because clothing (along with food and shelter) was considered in-kind income.  Now the trustee's job should be easier, because she can use trust funds to pay for the beneficiary's clothes without reducing the SSI benefit. (However, food and shelter are still considered in-kind income that can reduce the SSI benefit.)

•  The $4,500 limit on the value of an automobile has been eliminated.  Formerly, if an SSI recipient owned an automobile, it had to be worth $4,500 or less, unless it was specially adapted, required for medical transportation, or needed because of distance or geography.  Now Social Security disregards the car's value.

•  The $2,000 limit on the value of personal items a recipient can own has been eliminated.  Formerly, the value of a recipient's personal property (such as furniture, computer, jewelry, etc.) could not exceed $2,000.  Now there is no monetary limit on that kind of property.  Note, however, that the new law affects only personal items.  SSI's strict $2,000 limit on liquid resources (cash, bank account, savings bonds, etc.) remains unchanged.  

Besides these important changes, this second edition contains the 2005 figures for all SSI-related examples and calculations. Also, the 2005 figures have been used for all SSI-related programs, including SSDI and Medicaid.

3. Online Newsletter for Self-Advocates -
National E-Newsletter for Self-Advocates from the Self-Advocate Leadership Network at Human Services Research Institute

You're invited to read our October issue of The Riot!

Download The Riot! as a PDF document by clicking here: http://www.hsri.org/docs/Riot_Issue_6.PDF
Download The Riot! as a text file: http://www.hsri.org/docs/Riot_Issue_6.RTF
To visit our website click here:  http://www.hsri.org/leaders/theriot .  

Source: Monday Morning in Washington

4) Transition to Adult Health Care: A Training Guide in Two Parts
This training guide is intended to serve as a framework for anyone interested in helping young people with special health care needs and their parents prepare for the transition to adult health care. This guide is available to download or purchase and contains information and worksheets for parents and youth.

Downloadable at: http://www.waisman.wisc.edu/hrtw/Adult_Teen.pdf

Also available for purchase. http://www.waisman.wisc.edu/hrtw/Publications.html

5) Keeping Consumers Needing Lon Term Care in the Community and Out of Nursing Homes – KCMU) Kaiser Commission on Medicaid and the Uninsured - http://www.kff.org/about/kcmu.cfm In recent years states have been trying to shift resources from institutional to home and community based long-term care services.  This report examines "transition" and "diversion" policies and practices in eight states.  It provides a sense of what state Medicaid programs are doing or could be doing to promote diversion.

Report - http://www.kff.org/medicaid/upload/Strategies-to-Keep-Consumers-Needing-Long-Term-Care-in-the-Community-and-Out-of-Nursing-Facilities-Report.pdf   (.pdf)

Executive Summary - http://www.kff.org/medicaid/upload/Strategies-to-Keep-Consumers-Needing-Long-Term-Care-in-the-Community-and-Out-of-Nursing-Facilities-Report-Executive-Summary.pdf   (.pdf)

Essay: An Effective Complement: Advocacy & Forgiveness

This "Blog" is reprinted here with permission from the author.  (John Reiss, List Moderator)

Living the life of a disability advocate can make the world seem like a very adversarial place. Of course, a lot of it depends on your experience.   Most of the time, parents of children in early intervention services feel nurtured by their early childhood specialists. Everyone is concerned about the development and health of your baby and looks for the typical milestones along with you. Parents feel supported as specialists suggest strategies to keep the baby from sliding out of the high chair, to finally get up on all fours to crawl, or to sign their first word, "more," which everyone regrets later. I hear many parents describe Early Intervention services as a type of cocoon, protecting them from what lies just around the corner: school-aged services.

Over the years, I've had to advocate staunchly for my son. I remember walking into a "brainstorming meeting" to find it was a full-blown IEP review with no notice. 17 people sat around a table smiling pleasantly at me, reassuring me there was nothing to worry about. He was only five at the time. In those early years I was devastated after every meeting. I felt exhausted-like one of the "Dementors" from Harry Potter had sucked all but a last breath from me. In just a short time, "advocacy" became synonymous with anger and frustration.

Since then, I've learned that being an effective advocate for my son, who has significant disabilities, means having impenetrable skin. It also means not thinking of him as my son, or me as his mother, during the meetings or at school. Rather, it becomes a business deal from my perspective. I force myself to sit back and watch the interaction of the team, listen to their comments, and then ask for the time I need to process the information. All must be done with as little emotion as possible. Sometimes I am more successful than others.

There are times when my feelings get the best of me and I am overwrought with anger, hurt, resentment-every negative feeling we have words to describe and some we do not. It is easy, perhaps too easy, for parents to fall into a constant pattern of righteous indignation. One of the best things about the years Andy was included in elementary school was being able to spend time with other parents who were constructively involved with the school community rather than being surrounded by anger and frustration all the time. This is because the school did not have a "special education room." When he moved on to middle school, I cried when I met some parents in his homeroom, a visually based classroom. The first meeting I attended was filled with anger, bitterness, and blame. I felt like I was being poisoned.

How did this happen? I agree that more often than not parents have a lot to be frustrated and angry about. Constantly maneuvering to find someone who sees your child as a great kid (rather than being told all the things he can't do) is not easy. Living under the microscope of special education without feeling judged at some point is impossible. The "evaluation" is not limited to academics, school situations, or your child's strengths. Folks tend to want to know just what it is we're doing at home to teach our children.

I've been doing some reading on forgiveness over the past year. I am increasingly convinced it is the missing link in advocacy efforts. Not being able to forgive eats away at us and breeds bitterness. The injustice takes on a life of it's own; it is all-consuming. It becomes a part of daily life. That means your adversary wins.

My first introduction to this concept came from the book, How Good Do We Have to Be? By Harold   Kushner. He tells the story of asking a woman whose husband had an affair, left her, and fell chronically behind in child support payments to forgive her husband. When asked how he could suggest such a thing, he replied, "'I'm not asking you to forgive him because what he did wasn't so terrible; it was terrible. I'm suggesting that you forgive him because he doesn't deserve to have this power to turn you into a bitter, resentful woman.'" For me, that was a new spin on forgiving someone.

The last thing my children need is a bitter, resentful, angry Mother, nor do I want to be that person. I enjoy life and like to revel in the good things, large and small. I love watching my children learn and grow, each at their own pace. I enjoy being helpful and looking for constructive solutions or steps to overwhelming situations. I like to laugh. I want to be a nice, warm-hearted person, not a sour, negative, cross one. I want to be able to walk into my son's school community and be the person I was before special education entered my life.

Like many people, I wondered if I forgive people who have hurt me-whether it was intentional or not-I also agree that nothing wrong happened. What I have learned is I do not. I had to learn what forgiveness is, and what it is not. Here is some of what I have learned.

Forgiveness is:

• letting go of the anger and resentment you feel
• looking for the good in a situation.
• restraint from seeking revenge and harboring resentment
• a freely chosen gift.
        
• a personal decision. It only takes one person to forgive.
• a way of healing your wounds from the injustices and hurts you have incurred
• healthy. Research suggests forgiving those who offend you may ease depression, high blood pressure, backaches, muscle tension, and even heart disease.
• brave. It takes a brave person to forgive someone who has hurt them without asking for anything in return.
  

Forgiveness is not:

• forgetting what happened. In fact, it is better to forgive without forgetting. "You can forgive the bully and still watch your back."   (Bob Enright, International Forgiveness Institute) We can learn from every experience and make corrections. This strategy seems the best for advocacy work. Learning (and remembering who you can trust) without hanging on to the bitterness.
• letting the other person or people off the hook. You can forgive someone and still hold them accountable for their actions. This is especially true in legal situations, including IEP meetings. Rules are rules.
• a guarantee there will be reconciliation. Forgiveness is a gift we choose to offer to another person. They may not reciprocate. It takes two people to reconcile.
• overlooking what happened. In fact, in order to forgive, a person   must truly understand the offending event.
• condemning someone. Back-handed forgiveness doesn't do anyone any good. In other words, offering forgiveness to show how hurt you are defeats the purpose.
• a means to justice. Forgiveness does not demand compensation first.
  You choose to give it or not, no strings attached.
  

I believe forgiveness strengthens my ability to advocate effectively. By letting go of resentment and anger, people are more willing to talk and problem-solve. They are less likely to worry   the discussion will become a battle with an angry parent. Remember, forgiving someone does not mean they are not accountable for their actions. No one loses their rights by forgiving an injustice.

Learning about forgiveness has given me a lot to think about. Have I truly forgiven every situation I am resentful over? No. But I am working on it. I am learning that it is harder to forgive those things that I have held onto for a long time-such as the IEP I mentioned earlier-than events that are recent. Perhaps our response to situations becomes so ingrained that changing how we feel about it takes time and work. After all, forgiveness is not meant to be easy, if done correctly.

These days I am not as easily upset in meetings about my son, though I have my moments. I am working on remembering to truly examine the situation, tease out the lessons, and then work on forgiveness. It feels much healthier. And I am much happier for the work.

Take care of each other,



Joan Guthrie Medlen, R.D., L.D.  Program Director and Editor

(note: This blog is admittedly written from the slant of the parent. However, all the concepts are true from the perspective of a teacher or support person.)

References:

Kushner, H.S., How Good Do We Have to Be? A New Understanding of Guilt and Forgiveness. Back Bay Books (1996), ISBN: 0-316-51933-2

International Forgiveness Institute. About Forgiveness.
http://forgiveness-institute.org/html/about_forgiveness.htm