March 2018, Vol. 4, No. 2
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RAISE The Standard
Newsletter
Raising the Standard for Young Adults with Disabilities
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Technical Assistance and Resources for RSA-funded
Parent Training and Information Centers
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DECISION-MAKING
“Where, after all, do universal human rights begin?
In small places, close to home - so close and so small they cannot be seen on any maps of the world.
Yet, they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works.
Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination.
Unless these rights have meaning there, they have little meaning anywhere.
Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”
- Eleanor Roosevelt
In her 1958 message to the United Nations Human Rights Committee on the 10th anniversary of the adoption of the United Nations Declaration of Universal Human Rights.
In this issue of RAISE, we take a deeper look at self-direction as it relates to decision-making, and we explore the nuanced nature of supported decision-making (SDM).
Just what is supported decision-making?
Supported decision-making can sound like a new, foreign idea. But most families, people with disabilities, and advocates are already using supported decision-making, even if they don't call it that. In fact, most people without disabilities are also already using supported decision-making!
Supported decision-making means helping a person understand, make, and communicate his or her own decisions. This will look different for everyone.
What are the rules in YOUR state? This
colorful responsive map of the United States allows you to click on your state and then view guardianship and decision-making laws.
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In this issue, we offer you not one, but TWO videos, including a family perspective.
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We love Gabby Castro’s story about supported decision-making, and what it has meant for her life.
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The Mouat family talks about the opportunities and challenges of supported decision-making in the video produced by Disability Rights Texas.
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The American Civil Liberties Union (ACLU) has produced this
easy-to-use guide for people with disabilities and their families on how to make supported decision-making agreements. It includes non-binding written agreements that can structure the decision-making and make it easier for the person to get the help they need in the areas in which they want help.
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How to ask for help.
1. Begin with what you have decided:
For example: “I am not happy with my current job, so I want a new one.”
2. Think about WHO you want to help you:
Teacher, counselor, parent, friends?
3. Decide what type of help you want.
For example: “I want your help figuring out a few things I might be good at.” Or, “I want your help with my resume,” or “I want your help finding a job in the field of child care.”
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This fun illustration is from a
45-page guide produced by ASAN offering an overview of supported decision-making and includes a section on how to ask for the help you want.
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“What does person centered planning mean when a person might have difficulty making choices?”
In this 7-minute video from our friends at Transition Tennessee, Jonathan Martinis, Esq., Senior Director for Law and Policy at the Burton Blatt Institute at Syracuse University, breaks down supported decision-making, and describes how all of us can help teach these skills.
With statistics and individual cases, Jonathan Martinis challenges his audiences to rethink how they perceive risk, protection, and capacity for persons living with disabilities. Participants will gain an understanding of how less restrictive alternatives can be created, and can make the most of an individual’s capabilities and supports.
And if you like that, check out a full 10-part series produced by the Minnesota Department of Human Services, that takes viewers from theory into practice.
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What is supported
decision-making?
Supported decision-making (SDM) is a tool that allows people with disabilities to retain their decision-making capacity by choosing supports to help them make choices.
Q: What does supported decision-making actually look like?
Supported decision-making will look different for everyone. It means finding supports to help a person with a disability understand, make, and communicate their own choices. When using supported decision-making, the person can execute a Supported Decision-Making Agreement that identifies their method of decision-making. This document can help doctors, bankers, lawyers, and other third parties to understand and accept the decision of the person with a disability.
Q: What are some examples of tools used in supported decision-making?
Examples of tools might be:
- Plain language materials or information in visual or audio form.
- Extra time to discuss choices.
- Creating lists of pros and cons.
- Role-playing activities to help the person understand choices.
- Bringing a supporter into important appointments to take notes and help the person remember and discuss their options.
- Bill payment tools such as auto-payments or bill management notification apps.
From SupportMyDecision.org produced by Disability Rights Maine’s Supported Decision-Making Coalition.
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Social Security Rep Payee Policy Recommendations
A new publication "Improving Social Security’s Representative Payee Program," produced by the Social Security Advisory Board and published in January 2018, offers ways to improve the program’s use of representative payees.
The 45-page document is packed full of policy recommendations, including that the SSA standardize the process by which financial capability determinations are made. On page 21-22, the report recommends more use and study of supported decision-making and takes a look at supported decision-making as an alternative to representative payees for some individuals.
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June 26-28, 2018
APSE Conference Lake Buena Vista, Florida
The National APSE Conference is the only national conference focused solely on the advancement of Employment First.
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New York State Transition Partners is a collaboration of
Starbridge,
The Parent Network of Western New York, and
INCLUDEnyc that provides information and strategies to help young adults with disabilities and their families access and navigate vocational rehabilitation and other public systems that can help with financial stability, meaningful employment, and post-secondary education.
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Leaders from that partnership joined us at the RAISE Summit held last fall in Rutherford New Jersey: (l-r) Barbara Glassman, Executive Director of INCLUDEnyc, and Susan Barlow, Executive Director of the Parent Network of Western New York.
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Collaboration • Empowerment • Capacity-building
The Raise Standard
enewsletter identifies and shares resources that the Rehabilitation Services Administration Parent Training and Information Centers (RSA-PTI) can use and share with families.
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Executive Editor:
Peg Kinsell
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RAISE, the National Resources for Access, Independence, Self-Advocacy and Employment is a user-centered technical assistance center that understands the needs and assets of the RSA-PTIs, coordinates efforts with the Technical Assistance provided by PTI centers and involves RSA-PTIs as key advisors and partners in all product and service development and delivery.
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RAISE is funded by the US Department of Education to provide technical assistance to, and coordination of, the 7 PTI centers (RSA-PTIs). It represents collaboration between the nation's two Parent Technical Assistance Centers (PTAC) and the seven Regional PTACs.
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