• Parent Advocacy for the 2009 Legislative Session
• Accessing Legislative Information
• 2009 Bills to Watch
• Self-Determination Pocket Guide
• Understanding Medicaid

Parent Advocacy for the 2009 Legislative Session

As a result of our local and national economic downturn, many public and private programs that serve children and young adults with disabilities have been and will be negatively impacted. Among budget cuts announced December 22, 2008 in the (Governor's) Executive Budget Request for the fiscal year 2009-2010 (July 2009 to June 2010) are:

• more than $11 million and 195 temporary positions from special education;
• $500,000 of purchase of service monies in the Child & Adolescent Mental Health Division; and
• more than $400,000 from the Department of Health's Respite Fund to provide parents of kids and young adults with disabilities a break from caregiving.

A number of parent and child advocacy organizations are working now to draft a plan for ensuring that the voices of parents and community members are heard by key legislative committees. The aim is to assist legislators in making decisions based on full knowledge of the impact of policy decisions and program budget cuts on children and families. Below are some organizations that welcome parent advocacy with email links for more information on their legislative action agenda. We suggest you make contact and find out what each organization is targeting for legislative support. If it matches your interests, you can ask to be notified of pending legislation.

• The Special Education Advisory Council
• The Child & Adolescent Mental Health Task Force
• The Community Children's Councils Legislative Coalition
• The State Council on Developmental Disabilities

Accessing Legislative Information

The Hawaii State Capitol has a very user-friendly website that contains a huge amount of information, including information on legislators, committees, the legislative process and pending legislation. You might want to start with A Citizen Guide to Participation in the Legislative Process. Then look through the other options on the Capitol website. Once the 2009 Legislative Session is in progress, you will be able to track key bills and resolutions by their bill numbers.

2009 Bills to Watch

Until several weeks after the Legislature opens on January 21, 2009 we won't have specific bills to share with our readers. However, we are aware of the intent of certain groups to introduce legislation. For instance, a task force on Autism Spectrum Disorders Benefits and Coverage will be presenting its findings by January 1st regarding the feasibility of enhanced insurance coverage for autism specific treatments and therapies, and it is likely that legislation will result. A recent summit for youth with disabilities also identified priorities for students including legislation that addresses cyberbullying and reducing the number of credits for graduation (for students not planning to transition to a four year college). Come back to this link in mid January to see what legislation has turned up on the radar screen.

Self-Determination Pocket Guide

"Understanding the Core Principles of Self-Determination" this pocket guide covers the key elements of self-determination, and the planning principles, tools, and resources available to make it work. It promotes the tools
needed for people with disabilities to control their own lives. Tom Nerney wrote this guide from the Center for Self-Determination, one of the founders of the self-determination movement. Some topics of the guide include: What
is Self Determination; What Are the Problems Facing People with Disabilities Today; and Emerging Best Practices In Self-Determination. The guide is very readable for families and people with disabilities. Cost of the guide is
$8. To find out more, log onto: www.trninc.com/selfdetpg.htm. For additional information contact: TRN, Inc., PO Box 439, St. Augustine, FL 32085-0439, 1-866-823-9800 (voice), 904-823-3554 (fax), www.trninc.com
(web), info@trninc.com (e-mail).

UNDERSTANDING MEDICAID

Home and Community Services: A Primer

Introduction: People of all ages with disabilities want the same opportunities every American wants: not just to survive, but to thrive. They want to live in their own homes and make decisions about daily activities, so they can go to school, work, church, recreation, and can participate fully in their communities. Historically, people with disabilities have not always been allowed this birthright. Society has often focused on a person,s disabilities rather than his or her abilities. But changes in philosophy and law have led to a new approach. People with disabilities are now recognized as being able to live in their own homes and other community settings and to lead satisfying and productive lives when provided the range of services and supports they need to do so.

This is the introduction found in the Primer "Understanding Medicaid: Home and Community Services: A Primer The Primer was published by the U.S. Department of Health and Human Services, through the Office of the Assistant Secretary for Planning and Evaluation. With all the efforts in working in Systems Change, changing to the Person Centered Approach to doing business, Inclusion Research Institute felt that everyone should be aware of this useful tool. You may obtain the Primer directly off the Internet at the following address: http://aspe.hhs.gov/daltcp/reports/primer.htm

If you have information about legislation of importance to families of children with disabilities, please share it with SPIN and we will post it on this web page.