KINewsYour family's source for
disability resourcesNovember, 2009 - Vol 1, Issue 7
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| WHAT'S NEW? |
The KIN team has been busy! We're pleased to tell you about some additions to our website.
Get Involved
We're excited to offer you a wealth of resources to encourage and support your involvement in life, in your community, and in your country. Volunteer. Vote. Advocate. Donate. Expand your knowledge. There are lots of ways to get involved and we hope our collection can get you started.
Visit the Get Involved section.
State-Specific Information
The State Resource Sheets will assist you in connecting to specialized organizations, agencies and groups in your state or territory.
Visit the State-Specific Information page.
Personal Stories
Hear or read the stories that individuals with disabilities and family members have told us and feel free to tell us your story too!
Visit the KIN Personal Stories page.
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| IN THIS ISSUE |
| Family Supports |
| Community Supports |
| Disabilities |
| Health & Mental Health |
| Legal & Legislation |
| Assistive Technology |
| Life Skills |
| Housing |
| Education |
| Employment |
| Recreation & Leisure |
| Transportation |
| Quality Assurance |
What do YOU want to share?
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Got an article, website, or announcement you'd like to see included in the next KINews?
Tell us about it at familysupport@aed.org.
Be sure to include a link to the article or website. |
FOR YOUR ENJOYMENT.....
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"Untitled (Red Circles),"
by Willie Harries
The artwork images in this newsletter have been generously contributed by the National Institute of Art & Disabilities (NIAD) Art Center which is an innovative visual arts center assisting adults with developmental and other physical disabilities in Richmond, California.
Click directly on the images to learn about the artist and purchase their work.
Learn More about the NIAD Art Center.
Visit the NIAD Art Gallery online.
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Greetings,
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What do you like to eat? Do you like to wear jeans or dress up a bit? What music do you like to listen to? Are you better at English or science classes? Do you want to work outdoors or in an office setting? Do you want a roommate? Who are you going to vote for? Would you like someone else to always make decisions for you?
This is at the very heart of all disability conversations, the right for all people with disabilities to make their own decisions, make choices, exercise their rights as citizens of our country and take responsibility for their actions.
It is called self-determination, and it is the focus of our November KINews. Start off by listening to one of KIN's new Personal Stories. Lisa uses a wheelchair and she says that's the last thing she wants people to notice. "Look at me," first is her motto and she's actively working and volunteering online and in the community. Listen to Lisa or read the transcript here. |
FAMILY SUPPORTS
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Self- Employment Q&A: Frequently Asked Questions From Families
What better way to have self-determination than by owning your own business? Would self-employment be a good option for you or someone in your family with a disability?
Read this article from Start-Up USA.
Partners in Living
The Minnesota Governor's Council on Developmental Disabilities has an online self-study course on self-determination, family support, community living, and assistive technology. Do yourself and your family a favor and take this excellent course from Partners in Policymaking.
United Healthcare Children's Foundation Grants
Did you know that United Healthcare Children's Foundation can give grants to families who have a child with a disability to help pay or partially pay for medical services or equipment that may not be fully covered by insurance?
Find out more about it from their website.
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COMMUNITY SUPPORTS
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Project 2020
Heard of Project 2020? It's a three-part program to help those who are elderly or disabled stay in their own homes and communities. Find out what the three components are, and then ask your state to participate.
Read the PDF from the National Association of State Units on Aging.
An Affirmation of Community
Authors Thomas Nerney, Richard Crowley and Bruce Kappel address the question of what creating a community to support all people, including those with disabilities, would be like, and why self-determination is important. In this 33-page article you'll find lots of ideas and truths.
Read it on the Center for Self-Determination website.
Creating Partnerships for Community
How can individuals with disabilities fully participate in their community? This document from the New York Developmental Disabilities Council has some useful information no matter which state you live in.
Read the Agenda for Change here.
Noewait
If you have applied for community services through a Medicaid waiver, you know all too well about the long, long waiting lists for services. This group is advocating for an end to those lists. They are also looking for some volunteers.
Learn more at Noewait.net.
Making the Most of Medicaid
Where does your state rank? All 50 states and the District of Columbia were ranked by UCP based on providing high quality care in the community for Medicaid users. Vermont topped the list.
Find out about your state from UCP.org.
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DISABILITIES
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National Town Hall Meetings for Autism Policy
Coming up SOON! On Nov 13th, Advancing Futures for Adults with Autism will hold national town hall meetings in 15 cities around the country to create a policy agenda for addressing the needs of adults with autism. Make the most of this exciting opportunity.
Visit the AFAA website.
Doctors Urged to Offer Options, Avoid 'I'm Sorry' When Delivering Diagnosis
When parents hear the news, they prefer to have as much information as possible about a fetus with Down Syndrome, and they want the ability to connect with a parent of a child with Down Syndrome to learn more.
Read more in this article from Disability Scoop by Michelle Diament.
National Council on Disability Report on Healthcare
This report, the Current State of Healthcare for People with Disabilities, is an in-depth look at healthcare and disabilities. For instance, did you know that most federally funded health disparity research does not include people with disabilities? This report is very long; use the introduction and table of contents to find sections of particular interest to you.
Read the report from NCD.gov.
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HEALTH & MENTAL HEALTH
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Health Care Reform and the Disability Community
What kinds of things should the disability community and their families be looking for in health care reform? Ari Ne'eman of the Autistic Self-Advocacy Network wrote a very informative editorial.
Read it in the Huffington Post.
Strategies for Successful Medical and Dental Visits
The New York State Developmental Disabilities Planning Council has these ideas for caregivers in checklist form to help make medical and dental visits easier for individuals with disabilities. It includes things like asking for a "get acquainted" visit.
Take a look at the checklist.
Partnership for Prescription Assistance
If you don't have prescription drug coverage, this organization will try to connect you, free of charge, with a program that will provide the drugs you need for free, or at a substantial discount. Sounds good?
Check it out at PPArx.org.
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| LEGAL & LEGISLATION |
VOTE. Nov. 3 is Election Day.
Get involved in decision making in your state by voting in local and state elections.
Read about voting on KIN's Get Involved Page.
Get beyond the sound bites and paid ads. To learn about your candidates' backgrounds, voting records, and interest areas, we suggest two non-partisan web sites (and there are lots more).
Votesmart.org
Congress.org
Judge Finds National Retailer Guilty of Discrimination
She was just trying to help her sister, but the employees of an Abercrombie and Fitch store would not let her assist her sibling with autism in the dressing room. In court the judge ruled in favor of the family.
Read about it at the website of TV station KAAL.
 "Untitled," by Lisa Blevens
Will Long-Term Care Be Included in Health Reform?
Do you need more information before you feel comfortable advocating for long-term care as part of the health care reform?
Read this article by Howard Gleckman in the Kaiser Health News to find out more.
National Health Law Program
Knowing the laws that pertain to your health is a good thing. Want to know more? This website has news and information about health laws.
Have a look at HealthLaw.org.
Adult Guardianship and Alternatives
Are you considering guardianship for your adult family member with disabilities? This guide from the state of Maine has good information on the options available to help you make the right decision, no matter where you live.
Visit Maine.gov to read the guide.
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| ASSISTIVE TECHNOLOGY |
Assistive Technology Funding StrategyHow can you find help in purchasing assistive technology that will make life easier for yourself or a family member? This tool from the AT Network shows how to develop an effective strategy to help secure funding for assistive technology in nine steps.Visit ATnet.org to learn about the strategy.How Assistive Technology is Going MainstreamBusiness Week has an article about how many of the hot new items used in devices like cell phones, video games and iPods were originally invented for people with disabilities. "Some customers need assistive technologies, and other people want convenience. We try to solve problems for the disabled community, then we drive the solutions into the mainstream, to let everyone take advantage of them."
Read all about it on BusinessWeek.com. |
LIFE SKILLS
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How One Autistic Young Man Runs a Business
Joe created his own kettle corn business and hopes to earn $100,000.00 by 2012. Besides being an entrepreneur, Joe has Down Syndrome, autism, and is nonverbal. So how did he achieve his dream?
Read this article from US News and World Report to find out.
We Have Choices: Stories of Real Lives Using Individualized Supports
Self-Advocates of New York helped produce this great publication which tells of eight ways that this group of self-advocates chooses to be valued members of community life. The use Wheel Power. The components are Home Life, Neighborhood and Community Membership, Family and Friends, Work, Creative Expression, Learning and Teaching, Sports and Adventure, and Spiritual and Religious Life.
Learn more about Wheel Power and read the stories.
Travel Training for Student Success
Are you worried that your student will not be able to get to work when s/he finishes high school? This curriculum will help a student learn to travel safely and independently on fixed-route public transportation.
Read up on it from the Easter Seals Project Action website.
 "The Hurricane Tree," linocut by Angela Rogers
Having a plan for emergencies is very important. This checklist is good for those who receive long-term care, their families and those who provide services to them. It provides information to discuss before an emergency, help with relocation, the responsibilities of an LTC ombudsman, a survey, and more.
Read this crucial information provided by the Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services.
I Can!
This is great video about abilities. It will make you smile.
Watch it on YouTube.
Person-Centered Planning Education Site
Would you like to learn about the concepts of person-centered planning? We thought so!
Take a look the site from the Employment and Disability Institute, at Cornell University's School of Industrial and Labor Relations.
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| HOUSING |
Fair Housing Accessibility First: Frequently Asked Questions
Find answers to the most frequently asked questions about accessible housing in categories such as electrical outlets, kitchens, renovations, showers, and washers, to name just a few.
Visit FairHousingFirst.org.
Housing Locators
Here's a collection of resources to find housing that is accessible, low-rent, and more.
Fine the list at Disability.gov.
Helping Elderly Leave Nursing Homes For a Home
Did you know that the New York Times had an article about the successful Money Follows the Person?
Read what John Leland wrote at NYTimes.com.
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| EDUCATION |
Students with Disabilities Finding That Higher Education is Within Their Grasp
Daniel has Asperger Syndrome. He started college this fall after finding a school that would be a good fit for his unique learning style. Find out more about Daniel and how colleges are accommodating more students with disabilities in this article by Catherine Stout for the Memphis Commercial Appeal.
Read the article at CommercialAppeal.com.
Student-Led IEP Meetings: Planning and Implementation Strategies
A Student-led IEP? What is that, how does it work, and what are the benefits? This article by Becky Hawbaker is written for educators, but is also great for parents and students.
Read the article the case story that was published in TEACHING Exceptional Children Plus.
My Summary of Performance Plan
Did you know that when students with disabilities finish school they need to have a Summary of Performance (SOP)? This requirement is from the 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA). The law requires that "the public agency provide a summary of academic and functional performance, including recommendations to assist the student in meeting postsecondary goals".
Click on the link A Model Summary of Performance in the text to see a sample an SOP.
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| EMPLOYMENT |
Where to Find A Job
Looking for a job? Disability.gov has a webpage that has lots of resources for finding a job if you have a disability.
Visit Disability.gov's Find a Job page.
Girls At Work: Discovering Employment Opportunities for Young Women with Disabilities
Find out what this project does to promote inclusion of young women with disabilities in the workforce in this article from Council for Exceptional Children.
What Can You Do? The Campaign for Disability Employment
Have you heard of this Campaign? You can learn about employment issues and even share your own experiences on this website. Kathleen Martinez, Assistant Secretary for the Office of Disability Employment Policy at DOL said this about it: "The campaign is about raising expectations and changing perceptions of people with disabilities."
Visit WhatCanYouDoCampaign.org.
Workers With Disabilities Can Be Assets
Would you like to know six good reasons for hiring a person with a disability?
Read them in this article from the Tribune Democrat in Johnstown, PA.
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RECREATION & LEISURE
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"Untitled (Hummingbird)," Collograph Print
by Jean McElvane
Man with Asperger's Debuts on 'The Amazing Race'.
Zev Glassenburg has Asperger Syndrome, and he's appearing on the Amazing Race reality show as a contestant. He and his partner will travel through eight countries in eleven days for a chance to win $1,000,000.
This Disability Scoop interview by Michelle Diament will tell you more.
Wheelchair Access for Planes
The Association for Airline Passenger Rights has endorsed a petition by a 17-year-old girl to make airplanes accommodate a person's own wheelchair.
Read more about it here in the JFActivist from the American Association of People with Disabilities.
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| TRANSPORTATION |
On the Road Again
Being able to drive or ride in an automobile can really improve a person's independence. If you need special features on a car, what should you consider before buying one? This article gives good ideas on this and other adaptive car issues such as easy and inexpensive adaptations and possible funding sources.
Check it out at Dynamic-Living.com.
United We Ride National Dialogue
Do you have ideas on how to increase access to more affordable, reliable, and accessible transportation for people with disabilities? You can pass your ideas on to policymakers during this two-week web-based dialogue from Nov 2-13.
Learn more about the Dialogue at UWRdialogue.org.
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| QUALITY ASSURANCE |
Quality Assurance/Quality Improvement
The Oregon Council on Developmental Disabilities is wrestling with implementing a quality assurance system. One of the principles they feel is important is that individuals will have access to home and community-based services and supports in their communities.
Find out what the other criteria for developing this system are at OCDD.org.
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HOW DID WE DO?
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Too much information? Not enough? Have something you'd like us to announce here? Your input will help us improve. Please feel free to contact us at familysupport@aed.org or call 877-535-7575.
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Sincerely, The KIN Team   | |
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