Jordan Thomas: Making A Connection Between Golf & Health Care Rights

....many health insurance providers cover prosthetic technology up to $5000 - $20,000 shy of the cost of Jordan's prosthetic legs. For children, having lesser technology can inhibit their ability to learn to walk, play with other children, and enjoy as normal of a life as is possible. What's more is that children require new prostheses every 18 months as they grow and their bones change, creating mounting expenses for families.

Jordan set out to do something about it by starting the Jordan Thomas Foundation. His foundation has raised $400,000 through the sale of bracelets, donations, and his annual charity golf tournament to help bridge the gap between the cost of modern prostheses for children and the amount that insurance providers are willing to pay. The money raised to date is helping three children have the security of growing up into adulthood with modern prosthetic legs.


Click here to learn more.

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Courage Center Presents 2009 National Courage Award to Jordan Thomas

While hospitalized after his injury [and amputation], Thomas was touched by the kids he saw who would never be able to achieve their dreams because they did not have the money to continue their recovery and rehabilitation. Part of the reason, he discovered, is that the current way insurance companies pay for prosthetics and orthotics does not begin to cover the costs, especially for growing children. Thomas wanted to help these children, so with the help of his family, at just 16, set up the Jordan Thomas Foundation to raise money for disadvantaged children with traumatic injuries who needed prosthetics and orthotics.

Click here to learn more about Jordan's award as well as the work he is doing to help kids with limb loss.

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JOB OPENING: ACA Seeks Government Relations Specialist to Help Lead Policy Efforts

The Amputee Coalition of America (ACA) is the leading national organization serving the needs of people of all ages living with the loss or absence of limbs. We have members, industry partners, peer visitors and support group leaders throughout the country. The ACA’s government relations and public policy department is committed to advancing policies aimed at ensuring that people with limb loss are able to reach their full potential.

The Government Relations Specialist for Healthcare analyzes pending and/or proposed legislation, regulations and amendments by identifying proposals, responding to notices of proposed rulemaking, routing information to subject matter experts for input and identifying the potential impact to the limb loss community in order to advise key decision makers. Establishes and maintains relationships with external entities such as government organizations, customers, coalitions, business associations, and unions by networking, sharing information and identifying areas of mutual interest in order to foster future interactions and strengthen the ACA’s position through a joint sphere of influence.

Click here to learn more and to apply.

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ACA Celebrates Progress in the Campaign for Hate Crimes Protections for People with Disabilities

The Matthew Shepard Hate Crimes Prevention Act, also known as the Local Law Enforcement Hate Crime Prevention Act (LLEHCPA) has been added to the Department of Defense Authorization bill. While there will be several amendments offered in the Senate debate on Monday, July 20th there are no other procedural obstacles and there will not be another vote on adding the Hate Crimes Prevention Act. This all but assures that this important legislation will finally pass through Congress.

The Amputee Coalition of America (ACA) signed on in support of the Local Law Enforcement Hate Crime Prevention Act (LLEHCPA) recognizing that bias against people with disabilities takes many forms, including violence.

This bill will broaden the definition of hate crimes to include disability, sexual orientation, gender and gender identity. It will grant agencies the authority to investigate and prosecute federal crimes based on the victim’s disability, whether real or perceived, and would authorize funding to states to help with the prosecution of Hate Crimes. It also makes grants available to state and local communities to combat violent crimes committed by juveniles, train law enforcement officers or to assist in state and local investigations and prosecutions of bias-motivated crimes.


For more information on this issue, read “ACA Works to Advance Protections for People with Disabilities”.

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URGENT: Connecticut General Assembly to vote on Monday. Take action TODAY!

It looks like the veto override is scheduled for Monday, July 20th, so we need your help TODAY to preserve the Connecticut prosthetic parity bill!!

Thank you to everyone who has already made calls. We need to keep up the pressure over the weekend in order to override the governor's veto of House Bill 5021 and advance the protections for access to prosthetic care.


TAKE ACTION (we only have a few days)! We must keep up the fight! Reach out to your family and friends, and get everyone to call their local legislators to encourage them to vote to override the veto on HB 5021! There's still a good chance we can get prosthetic parity passed this session, but members need to hear from you!

CALL YOUR LEGISLATORS TODAY! Click here to learn more and take action.

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BREAKING NEWS! Governor Rell vetoes prosthetic parity bill. Take action today!!

We are sad to say that Governor Rell recently vetoed HB 5021, which included coverage for prosthetic devices. The governor vetoed several other bills including a bill related to health and nutritional information in restaurants and a green jobs bill. We still have a chance. If the governor vetoes a bill when the legislative session is over, the legislators come back for a three-day veto session about two weeks after the governor's last action. That means we need to act fast.

TAKE ACTION TODAY! Click here for contact information, a sample phone script and sample e-mail.

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TAKE ACTION: Urge your members of Congress to protect amputees' needs in healthcare reform legislation!

The health reform battle is ramping up. It is imperative that we work hard to push for the needs of amputees. We need your help to tell members of Congress where we stand on health care.

The ACA is joining a coalition of disability rights group in calling for national call-in days. Next week we urge you to call your members of Congress and tell them not to DELAY! Our message --- we need strong comprehensive health reform that helps ALL Americans, including people with limb loss!

TAKE ACTION! On July 7th and 8th, callers can use the following toll-free number: 1-866-210-3678 to contact their representatives and senators.

We must work together to make comprehensive, high quality health care for all a reality. Help us flood the switchboards at the Capitol on July 7th and 8th. Urge your members and coalitions to call in using 1-866-210-3678.

When you call the toll free number, you will ask to speak with your representative. (if you do not know who represents you, click here)

Please, also call your senators' offices! (click here to find out who represents you in the Senate)

Any healthcare reform proposal that truly gets at improving health systems and enhancing access must address the specific needs of people with limb loss!

Talking Points
• True healthcare reform must include specific language providing access to assistive devices such as wheelchairs, prosthetics and orthotics!

• Congress must address the two-year waiting period for Medicare disability benefits.

• Adequacy of coverage is critically important. Please, oppose any that would preempt or roll-back state benefit laws.

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ACA ADVOCACY UPDATE, Week of June 8th

From the States
▪ In the final hours of their session, CT passed parity into law. The language was inserted into another health benefit bill. It is now awaiting the governor’s signature. If she takes no action it becomes law after 15 days.

Overview of the State Campaigns
▪ There are now a total of 18 states with parity laws in place (CO, ME, NH, RI, CA, MA, OR, NJ, IN, VT, LA, AR, IA, MD, TX, MO and CT).

▪ Bills are now being advanced in PA, WI, IL, MI, NY, NC, AL, MN, NE, ND, UT, AZ, OH, ID, NC, GA, KS, KY, TN and WA.

▪ We are also working with ME to get the microprocessor exemption taken out of their existing parity law.

ON THE HILL --- Parity
▪ As you know, the House re-introduced the federal parity bill on May 21st (HR 2575). We have been working to identify additional co-sponsors.

▪ We have been meeting with members of the House Education & Labor, Ways & Means and Energy & Commerce committees to bring on new co-sponsors and cultivate support around healthcare reform.

▪ Our two issues for reform have been the inclusion of assistive devices in the minimum standards and the inclusion of people with disabilities in the health disparities. This gives additional attention to the particular needs and concerns of people with limb loss in terms of research, provision of care, care standards and coordination of services.

▪ We are working with Senators Snowe and Harkin to re-introduce the Senate version. We were in touch with Lee Perselay and Jenelle Krishnamoorthy from Snowe’s office this week regarding the need to get the bill re-introduced ASAP in order to keep up the momentum not only for the stand alone, but more importantly the healthcare reform provisions.

HEALTH CARE REFORM

▪ Chairman Edward M. Kennedy and Democratic Members and staff of the Senate Committee on Health, Education, Labor and Pensions (HELP) released the “Affordable Health Choices Act” on Tuesday.

Click here for a copy of the bill, http://help.senate.gov/BAI09A84_xml.pdf.

Some highlights from the bill include:

• Prohibits pre-existing condition exclusions

• Prohibits discrimination based on health status, including disability

• No lifetime or annual limits

• Requirement of a single risk pool

• Rehabilitative services referenced

• Community living assistance services and supports referenced

▪ There are a number of health reform timelines and bill summaries in circulation. Thought it would be helpful to meld them together in summary form. You will find a summary of likely House and Senate timelines for health reform legislation below.

House Timeline

End of Week of June 15 - Draft bill language is released. This bill will be referred to three committees- Energy and Commerce; Education and Labor; and Ways and Means

Week of June 22 - Hearings in the 3 committees (possibly at subcommittee level)
Week of June 29 – Recess; negotiations continue
Week of July 6 – Full committee hearings
Week of July 13 – Full committee markups
Week of July 27 - House floor consideration

Senate HELP Timeline

Week of June 8th – Committee walkthroughs and hearing/roundtable(s)Week of June 15th – Series of markups of different components of legislation
Week of June 22nd – Additional markups

Senate Finance Timeline

Week of June 8th - Ongoing bi-partisan member meetings.Week of June 15th - Committee mark released
Week of June 22nd – Committee markup over several days


Senate Floor Timeline

Week of July 20th – Beginning of consideration on Senate floor
Week of July 27th – Completion of Senate consideration

As you know, we are part of the Consortium for Citizens with Disabilities (CCD). CCD will have a presence and testify at the hearing. We will continue to communicate with relevant offices. We are also working to generate grassroots level contact with the offices around healthcare reform (http://www.amputee-coalition.org/armsandlegsarenotaluxury/index.html).

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Healthcare Disparities & People with Limb Loss

The ACA recently sent comments to the Senate HELP Committee staff, Chairman Kennedy and Ranking Member Sen. Enzi on the topic of health disparities and people with limb loss. The ACA is urging Senate leaders to ensure that health care reform will eliminate the disability-based health disparities faced by the more than 54 million Americans with disabilities, including the almost two million people with limb loss. Research shows that individuals with disabilities experience a lower rate of education, and employment, and a higher rater of poverty when compared to non-disabled persons. The Agency for Healthcare Research and Quality (AHRQ) reports that private health insurance is less available to people with disabilities. Two Surgeon Generals’ reports have called attention to the need to address disability-based health disparities in access to clinical care, prevention and wellness, and public health services. The main cause of acquired limb loss is poor circulation in a limb due to arterial disease, with more than half of all amputations occurring among people with diabetes mellitus. Today, diabetes is much more common in African Americans, Hispanic/Latino Americans, and American Indians/Alaska Natives. It is estimated that more than 75 percent of the amputations caused by diabetes complications might be prevented. Proper testing and treatment must be available in order to prevent both primary and secondary amputation.

Non-white, low-income patients without commercial insurance are more likely to delay diagnosis of peripheral vascular disease (PVD), which often results in amputation of the lower limbs. In spite of the startling evidence of the disability-based health disparities and the inherent costs to treat preventable conditions, current federal law does not consider individuals with disabilities a “medically underserved population” and fails to recognize disability-based health disparities under any federal program that addresses other health disparities. Health reform must fix this injustice.

Click here to read the ACA's letter to Chairman Kennedy, Sen. Enzi and the HELP staff.

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Healthcare Reform & People with Limb Loss

The ACA submitted comments regarding the Senate Finance Committee’s set of recommendations regarding policy options for health care coverage contained in the document Expanding Health Care Coverage: Proposals to Provide Affordable Coverage to All Americans. In summary, the ACA is supportive of the recommendations regarding individual and small group market reform. These improvements to the private health insurance market will have significant positive implications on the ability of all Americans to access affordable health insurance regardless of their health status. We also strongly support the recommendations regarding Medicaid, including recommendations that serve to eliminate the two year waiting period for disability coverage and inclusion of disability status as a category for purposes of measuring health disparities.

The ACA is deeply concerned, however, with the limited scope of the benefit package that would be available under the Health Insurance Exchange. Based on the document released by the Committee, there is a complete absence of any benefits related to rehabilitation therapies and related services (in both the inpatient and outpatient settings) as well as durable medical equipment, orthotics, prosthetics (DMEPOS) and other assistive devices.

Click here to read the ACA’s comments to the Expanding Health Care Coverage: Proposals to Provide Affordable Coverage to All Americans proposal.

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ACA ADVOCACY UPDATE, Week of May 25th

From the States

▪ Bills passed in 6 states during the 2009 session (IA, VA, MD, AR, TX and MO).

▪Bills are still in play in 6 states (PA, WI, IL, MI, NY, NC).
ü MI: Referred to the Health Policy committee. Awaiting action. Legislature meets throughout the year.
ü IL Passed out of the House. Passed out of the Senate committee. The insurance lobby is pushing hard for caps. Legislature meets throughout the year.
ü PA: Referred to the Health and Human Services committee. Awaiting action. Legislature meets throughout the year.
ü WI: Introduced 4/27. Legislature meets throughout the year.
ü NY: Referred to the insurance committee. Trying to work with sponsor to coordinate a day in Albany to jump start the efforts. Legislature meets throughout the year.
ü NC: Still discussing including language in another bill. They adjourn in July.

▪ The sessions in adjourned in 6 states without passing parity into law (AL, CT, MN, NE, ND, UT).

ü AL: Never moved out of committee. The legislature adjourned May 15th.
ü CT: We worked to revise the language several times. Action was not taken before they adjourned.
ü MN: Introduced 5/11. The legislature has adjourned until Feb 4, 2010/
ü NE: Died in committee.
ü ND: Passed the Senate. Died in the House.
ü UT: Passed in the House. Died before being voted on in Senate.

▪ We are working to organize meetings and calls to pull together a plan of action in each of these states building towards re-introduction in 2010. We are also working on identifying and cultivating local coalition partners.

▪ We are working to get legislation introduced in 2010 in 7 states (AZ, OH, ID, NC, GA, KS, KY).

▪ The ME bill to remove the microprocessor exemption from the existing parity law was carried over for the 2010 special session. Morgan traveled to Augusta on May 26th to meet with local leaders and activists to start the planning process.

▪ Two bills are currently being studied (TN and WA).
ü TN: Tabled for study over the summer and debate in the 2010 session.
ü WA: A study bill was introduced. We are waiting for the analysis.

ON THE HILL --- Parity
▪ The House re-introduced the federal parity bill last week (HR 2575). Authored by Rep. Rob Andrews (D-NJ), sponsors include Representatives George Miller (D-CA), Lincoln Diaz-Balart (R-FL), Todd Platts (R-PA), Joe Sestak (D-PA), and Al Green (D-TX).

▪ We are meeting with targeted members of the Ways & Means, House Education & Labor and Energy & Commerce committees to secure additional co-sponsors and push for inclusion of assistive devices within healthcare reform.

▪ We are also reaching out to past sponsors to push for them to sign on to the 111th version.

▪ We are continuing our in-district push. We developed a kit and materials for the Memorial Recess.

▪ We are continuing to work with Senator Snowe’s office to get the bill introduced in the Senate. The ACA is in a meeting on Friday, May 29th with her staff.

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