• Title I Paralysis Research. The bill expands research on paralysis at the National Institutes of Health (NIH) by establishing the Christopher Reeve Paralysis Consortia. This style of research promotes collaboration - connecting scientists doing similar work in multiple fields to enrich understanding and speed discovery of better treatments and cures.
• Title II Paralysis Rehabilitation and Care. The bill calls for rehabilitation research to advance daily function for people with paralysis including intensive, activity-based research to measure the effectiveness of certain rehabilitative tactics that aim to improve mobility, prevent secondary complications, and develop improved assistive technology.
• Title III Improving Quality of Life for Persons with Paralysis and Other Physical Disabilities. The bill will develop unique programs at the Centers for Disease Control & Prevention (CDC) to better the quality of life and long-term health status of persons with paralysis and other physical disabilities. Programs include providing grants to non-profit health and disability organizations to educate the public about paralysis, improve access to services, and integrate life with paralysis into society, as well as coordinate services within each state to assist persons living with paralysis. "

Status:

H.R. 1727 was referred to the Subcommittee on Health on 3/29/07.
S. 1183 was passed out of the Senate Health, Education, Labor and Pensions (HELP) Committee on 8/3/07.  On 8/3/07 S. 1183 was placed on the Senate Legislative Calendar under General Orders, Calendar No. 326.

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The Lifespan Respite Care Act was introduced by Rep Mike Ferguson (NJ) on 7/12/2005.  The primary purpose of the bill (H.R. 3248) was to amend the Public Health Service Act to establish a program to assist family caregivers in accessing affordable and high-quality respite care.  The Lifespan Respite Care Act of 2006 became public law on 12/21/06 (P.L. 109-442).  Grants are to be awarded by the Secretary of the Dept. of Health and Human Services (HHS) to State-designated Aging and Disability Resource Centers for the purposes of developing lifespan respite care services for family caregivers of children and adults; training and recruiting respite workers and volunteers; providing information to caregivers about available respite and support services; and assisting caregivers in gaining access to such services.

Full text of this Act can be accessed at The Library of Congress THOMAS.    Just go to the link "Public Laws" and look for P.L 109-442.

The Christopher and Dana Reeve Foundation reports that although the Lifespan Respite Care Act of 2006 was signed into law on December 21, 2006 the law cannot be implemented until Congress appropriates the funding for FY08.  The Christopher and Dana Reeve Foundation has an ACTION page for those who wish to contact their US representatives and urge them to fund the Act.  Click here for info about how to contact your representative and also contains the Congressional letter to House Labor, HHS, Education Appropriations Committee Chair and Ranking member to fund the Lifespan Respite Care Act at $40 million in the FY08 Labor, HHS, and Education Appropriations bills.

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The Medicare Independent Living Act of 2007 was introduced in the house on March 29, 2007, bill number HR 1809.  The purpose of the bill, introduced by Congressman Langevin (D-RI), is to amend title XVIII of the Social Security Act to eliminate the in the home restriction for Medicare coverage of mobility devices for individuals with expected long-term needs.  The "in the home" rule restricts coverage of mobility devices such as wheelchairs to individuals who need them for in-home activities.  Therefore, people who do not need the device in home, but may need it to go to work, school, doctors' appointments, etc. would not be eligible for coverage.   As the Christopher Reeve Organization points out, this restriction "unfairly confines many individuals with disabilities to the four walls of their homes and sharply contradicts community-based initiatives such as the Olmstead Supreme Court decision, Ticket-to-Work Program, New Freedom Initiative, and Americans with Disabilities Act." http://www.christopherreeve.org/site/c.geIMLPOpGjF/b.1452617/k.2BB3/Additional_Legislative_Priorities.htm

Status: This Bill was referred to the House Subcommittee on Health on 3/30/07.

Full text of this Bill can be accessed at The Library of Congress THOMAS.    Go to the "Search Bill Text"; box for the Current Congress (110th Congress) section and type in the Bill's number (HR 1809) or its title (Medicare Independent Living Act of 2007).

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The Spinal Cord Injury Association of Illinois provides legislative updates for informational purposes only, and neither supports nor opposes any legislation discussed herein.

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LEGISLATIVE RESOURCES

Listed below are a number of resources that may be helpful to an individual or organization interested in participating in advocacy at the policy level. This is by no means an exhaustive list, but rather one we are hoping to continue to grow. Please send suggestions for additions to: SCIInjury@aol.com. Thanks!

Who are my representatives?

Find your federal representatives at:

http://www.house.gov/writerep/

Find your Illinois representatives at:

http://www.ilga.gov/

(Click on "legislator lookup" under "additional resources.")

How do I know what is happening in terms of legislation?

Coalition of Citizens with Disabilities in Illinois frequently posts updates on legislation in Illinois:

http://www.ccdionline.org/legislation.php

How can I get involved in public policy advocacy?

There are several ways to get involved in public policy advocacy. These range from making a phone call to your representative's office, writing a letter or email, or scheduling a visit. Here we have listed several resources from several organizations and agencies regarding policy and legislative advocacy. If the first link seems like it doesn't answer the questions you're asking, please try the next! While some may have repeat information we have included all here in order to offer a variety of perspectives and sources of information for our diverse range of interests and skills.

The American Association of Spinal Cord Injury Psychologists and Social Workers offers an "Advocate's Tool Kit":
http://www.aascipsw.org/pages.php

The Council for Disability Rights offers information on voting:
http://www.disabilityrights.org/election.htm

The Paralyzed Veterans of America (PVA) offers a number of links to advocacy resources:
http://www.pva.org/

The Consortium for Citizens with Disabilities provides information on a number of disability-related legislative issues:
http://www.c-c-d.org/legislative_news.htm

Center for Lobbying in the Public Interest (CLPI) is an organization that encourages 501(c)(3) nonprofits to understand the enormous importance of lobbying and speaking out on behalf of their constituents, causes and communities. They provide a number of resources on their website:
http://clpi.org/advocacy_resources_hm.html

The David Suzuki Foundation is a Canadian environmental organization that has compiled a list of tips for contacting political representatives through various means:
http://www.davidsuzuki.org/Take_Action/Politicians.asp

Indiana University also offers tips on contacting representatives on their website:
http://www.gov.indiana.edu/hhe/tips.shtml

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We are a chapter of the National Spinal Cord Injury Association and Community Health Charities of Illinois.

For more information, contact Mercedes Rauen at:

Spinal Cord Injury Association of Illinois
1032 South LaGrange Road
LaGrange, IL 60525
Phone:708-352-6223
Fax:708-352-9065
E-mail: SCIInjury@aol.com