Four years ago, my son suffered a SCI (t3) in a car accident. He was 5 at the time. Two years ago, I quit my job to homeschool him because he stayed sick all the time. My problem is that even without my income, our local social security office tells us that we make too much money for him to qualify for disability. Is there anything we can do?

My issue is that airlines will allow families with babies, seniors, and disabled people on the plane first. However, they do not extend that courtesy on all airlines even when I requested it. Thus, my last flight, I was last and almost forgotten to give me assistance to get off with my bags, and even though I reminded them of my flight bag in the closet, they did not give it to the wheelchair transporter with my walker with a seat on it. Airlines do not accept responsibility for any bags, e.g., garment bags in the closet………so I am at a loss of a lot of clothes. It should be a rule or regulation to let us off first, too.

Here’s a behind the scenes look at some of the issues that have been keeping us busy and some of the things that we have been doing to move these issues along. Please feel free to contact us if you have questions regarding these issues or any of our activities related to them.

Health Care Reform (HCR)

We met weekly with members of the CCD Long Term Services and Supports Task Force to go through sections of the health reform bill that affect long term services and supports. The task force is developing a list of questions and comments to be directed at either Hill staff or staff at HHS.

The CCD Long Term Services and Support co-chairs met with Henry Claypool, Director of the Office on Disability at HHS to start a dialogue about health reform and long term services and supports. We discussed the future of the CLASS Act and where is should be placed as far as which agency has control of the program.

The U.S. Department of Health and Human Services (HHS) established the Office of Consumer Information and Oversight which will be charged with implementing many of the health insurance provisions in the new health care reform law. Jay Angoff, former insurance commissioner of Missouri and former Deputy Insurance Commissioner of New Jersey, will direct the office. The Office is responsible for ensuring compliance with the new insurance market rules, such as the prohibitions on rescissions and on pre-existing condition exclusions for children that take effect this year. It will administer the temporary high risk pool program and provide guidance and oversight for the state-based insurance exchanges.

The Office on Disability at the Department of Health and Human Services held a web chat to discuss how the new health care reform law will affect people with disabilities and their families. Henry Claypool, the Director of the Office on Disability, and Jeff Crowley, Senior Advisor to President Obama on disability, participated in the web chat. The web chat can be watched at: http://www.youtube.com/watch?v=ccKQNklpCWg&feature=player_embedded.

The CCD Long Term Services and Supports and Health Task Forces met together to talk about how to best approach the next steps in health reform. There will be hundreds of regulations coming out in the next few years and we all agreed that writing comments to proposed regulations is more work than any one group or CCD could do. The consortium is looking at options on how to best tackle the next steps of health reform.

We signed on to a letter to the White House and HHS urging adequate funding for a Department of Labor survey of employer-sponsored health insurance that will serve as a foundation for determining essential benefits in health insurance plans under health care reform. Without accurate information, essential health benefits may be endangered.

We have continued to receive positive feedback from the White House, Congress, and other associations regarding the health reform document that we put together. The document is still available on the Spinal Cord Advocates website at www.spinalcordadvocates.org and will be updated as health reform regulations are proposed and finalized.

Medicaid

Congress has struggled to find agreement on how to help states that are in a financial crisis. Many states are counting on Congress to extend the extra Medicaid assistance that is currently in place until the end of June 2011. The current assistance from Congress will end on December 31. If Congress does not act many states will have to lay off employees, reduce services, and possibly roll back advances that have been made to help people with disabilities live in the community.

We met with officials at HHS to discuss the public process of Medicaid waivers. HHS is preparing to issue new regulations that will strengthen the public input process for state Medicaid waivers. States will be required to strengthen the public input process when they apply for Medicaid waivers. During the previous Administration a letter was issued to State Medicaid Directors on various aspects of the Community Living Initiative. As part of the Community Living Initiative, HHS is working with several federal agencies, including the Centers for Medicare and Medicaid Services, to address barriers to community living for individuals with disabilities and those who are aging. The letter to State Medicaid Directors provides information on new tools for community integration, as well as reminds states of already existing tools which they can use to serve people in the most integrated settings. The letter discusses efforts to meet the requirements of the U.S. Supreme Court’s decision in Olmstead and provides some basic information on the new tools available through the Patient Protection and Affordable Care Act, P.L. 111-148 (”health care reform” law), noting that additional guidance on health care reform will be issued in the near future. The letter is located at:
http://www.cms.gov/smdl/downloads/SMD10008.pdf

Medicare

CMS is continuing to educate people who use Medicare how health reform will impact them. For people who use the Part D prescription drug program, they will receive a check for $250 if/when they have reached the “doughnut hole” for the 2010 calendar year.

FY 2011 Budget

It is unlikely that a budget resolution will be passed by Congress for FY 2011. It is expected that Congress will simply do appropriation bills and the majority of appropriations will be done after the November 2010 elections. For funding as of October 1 (the start of FY 2011), Congress is expected to pass Continuing Resolutions that enable agencies to function under FY 2010 spending levels.

Employment and Training

We continue an active role in drafting and developing recommendations requested by the White House from JFAAN at a meeting we attended some months ago. This work includes working with participants in the IRS Real Economic Impact Tour regarding tax incentives and a proposal calling for an executive order for the federal government to adopt a hiring policy for people with disabilities similar to an executive order issued by the Obama Administration to encourage federal employment of Veterans.

We met with Senate HELP Committee staff to discuss the status of reauthorization of the Workforce Investment Act (WIA) and the Rehabilitation Act. The HELP Committee has held some hearings but progress towards introduction of a bill remains slow.

Social Security Disability

In light of the Fiscal Commission’s charge to report its recommendations for deficit reduction and long term solvency by December 1, a new coalition has been formed: Strengthen Social Security. It is in the process of developing its positions and is a large coalition of many groups including unions and those focusing on seniors.

The Fiscal Commission continues to meet, though its subcommittees are not meeting publicly. It has promised an opportunity for public input at its meeting in June.

Adequate funding of SSA’s administrative costs is an on-going problem. The President’s budget gave SSA an 8% increase in its administrative budget, but, as noted above, Congress is not likely to vote on a budget. Given the current fiscal situation, it is necessary to fight to retain the President’s proposed level of funding. SSA has recently shown a slight decrease in the hearing backlog on disability determinations. On the other hand, there have been huge surges in both disability and retirement applications since the onset of the recession, with backlogs increasing at the initial disability determination stage and more appeals/hearings anticipated.

An SSA advisory panel (the Occupational Information Development Advisory Panel – OIDAP) is recommending a new disability determination process that could impair an individualized assessment of a claimant’s ability to work and eligibility for Social Security disability benefits. We are deeply concerned about several issues, including a recommended 12 minute telephone interview to determine the mental status of a claimant. We believe that the medical professionals who treat a claimant are in the best position to evaluate a person’s disabilities. CCD’s Social Security Task Force filed comments on the proposed recommendations in June, and we filed comments in concurrence.

Miscellaneous

The US Department of Justice (DOJ) filed a lawsuit alleging that the state of Arkansas is systemically violating the Americans with Disabilities Act of 1990 (ADA). DOJ filed the ADA action against the state of Arkansas due to its segregation of over 1,000 individuals in 6 intermediate care facilities for individuals with intellectual and developmental disabilities. DOJ believes that many of these people could live in more integrated community-based settings. This action is indicative of the new approach being taken by DOJ in assuring disability rights protections for individuals who reside in large state institutions. Arkansas’ current waiting list for community-based services is about 1,400 and moves very slowly. Read DOJ’s press release at:
http://www.justice.gov/opa/pr/2010/May/10-crt-538.html.

We met with the U.S. Department of Health and Human Services Office on Disability to discuss the award of over $6 million to establish a Center of Excellence in Research on Disability Services, Care Coordination and Integration. The contract has been awarded to Mathematica Policy Research, Inc for a two-year period and is funded through the American Recovery and Reinvestment Act. It is aimed at developing and conducting research on the effectiveness of systems of care for people with disabilities, including those related to rehabilitation, behavioral and psychosocial interventions. For instance, the new Center for Excellence will use Medicaid data (state plan and waiver services supplied by specific states) to identify and propose ways to achieve greater consistency on how these services are defined and used. We will continue following the actions the new Center and will have regular updates from the Office on Disability.

We attended a briefing and are supporting the Prosthetic and Custom Orthotic Parity Act of 2010 (HR 2575/S 3220). The legislation would ensure that there that insurance provide equal coverage for prosthetics and orthotics that it does for other medical treatment.

United Spinal staff Andrew Morris is mentoring an intern with AAPD again this summer. The AAPD internship programs places college students with members of Congress and in the Administration for the summer.

Sign-on’s

In addition to the sign-on letters otherwise mentioned, we signed on to the following:

A letter to the HHS Secretary asking that lifetime and annual caps for insurance plans end when the health reform law requires. There is a loophole that may allow some insurance companies to extend lifetime and annual caps.

A letter in opposition of HR 1255, a bill that would make it more difficult for the Protection and Advocacy System to file suits on behalf of people who are confined to institutions.

A letter asking for $10 million to be appropriated for Family to Family Health Information Centers for children with special health care needs. The funding that they receive now is barely enough to keep the centers open with one or two staff per state.

A letter of support for HR 2059 to enable military personnel who have a family member with a disability to designate a special needs trust to receive military retiree and survivor benefits annuities rather than a natural person. Without this bill, if benefits are paid directly to the family member, the payments can jeopardize that person’s eligibility for Social Security and Medicaid benefits.

Common acronyms in Public Policy Reports

I recently received a letter from my health care provider Synergy - actually “administrator”, noting that my local DME partner’s submission to them for repairs to my manual wheelchair are not covered by my policy. It’s sad that my response to receiving the letter was a resigned shrug and long sigh as I considered whether to, yet again, appeal to the powers that be to support what I felt was an exceptionally reasonable request for wheelchair repair.

I feel a personal responsibility to limit the burden that I place on our overburdened health care system, and that played into my approach to having my chair repaired vs. submitting for a new chair (my chair is 7 years old, however, the titanium frame is in fine shape).

While the repairs will not be cheap, the cost for a new, like piece of equipment would dwarf them. I felt I was doing the right thing, but as always am running into the common standard of doing business in the health coverage industry. That standard doesn’t consider long-term costs to the system, preventive care/maintenance, or even encourage responsible or engaged behavior on the part of beneficiaries. Rather, it counts on those charged with its dissemination - or many of them - to be able to read the fine print of the policy and decline, decline, decline. Clearly they know that most beneficiaries won’t have the stomach or capacity to actually appeal a denied claim, and will ultimately capitulate and either forego care or support, or pay personally and relieve the system of any responsibility.

I expect that I will, in fact, appeal this unwarranted rejection of reasonable repairs to my wheelchair, continue to pay my premiums, and accept a lower quality of life in the interim…regardless of the outcome.

In the case that was brought before the district court, the state of Florida had told the plaintiff that she must move into a nursing home for 60 days before she could be eligible for home- and community-based services under Medicaid. In the complaint filed, the plaintiff explained that the nursing home requirement would create undue hardship and take her out of her home and community. The court agreed and said that the state would be violating the 1999 U.S. Supreme Court Olmstead decision by forcing the plaintiff into a nursing home.

The Olmstead decision ruled that people with disabilities must be allowed to live in the community of their choice as part of the Americans with Disabilities Act.

We are very happy with this decision and pleased that the Department of Justice took a position with the case that supports home- and community-based services.

More information can be found on the Department of Justice’s website at http://www.justice.gov/opa/pr/2010/June/10-crt-741.html.

In light of state financial crises, last year Congress offered to increase the federal government’s share of Medicaid costs to help maintain health coverage for those who depend on Medicaid — including many people with disabilities. State budgets start July 1 and states are still unable to support Medicaid at its current level.

The Senate has been trying to pass legislation that would give states additional Medicaid assistance until June 30, 2011. So far, the measure has not had any Republican support. And Senators Lieberman (I-CT) and Nelson (D-NE) are not supporting the effort. The proposal has been part of a bill that would provide a “fix” to physician reimbursement rates under Medicare.

Last Friday the Senate passed a temporary (six month) fix for Medicare doctor rates, but did not include the additional Medicaid support. The Speaker of the House, Nancy Pelosi (D-CA), has indicated that she may wait for the Senate to pass a complete package of issues including the doctor “fix” and Medicaid assistance before the House will vote again (the House previously passed a similar measure).

Senate Majority Leader Harry Reid (D-NV) and Senate Finance Committee Chairman Max Baucus (D-MT) are continuing negotiations to try to pass the Medicaid assistance to states. If the measure is not passed, states will have to layoff employees, further damaging the economy, and thousands upon thousands of people will lose their health care coverage – including many people with disabilities.

Congress needs to pass the Medicaid fix. Even if Senators Lieberman and Nelson change their minds and vote in support, at least one Republican will be needed to end debate and move to a vote.

Andrew Morris, MPH
Director of Legislation,
Spinal Cord Advocates

Amazing gadgets have revolutionized our society; from Ipads, e-readers, pocket-sized camcorders, and paper-thin laptops that make it easier to do just about anything to cell phones and mobile devices that act as our high-tech Swiss Army knives connecting us to news, information, and family and friends in the blink of an eye.

But when it comes to the Electronic Revolution and all these great new tech toys, the disability community is usually left in the dark. A new bill in Congress and the National Broadband Plan, however, aim to make both the Internet and video more accessible to people with disabilities.

On the frontlines of this fight is Congressman Ed Markey (D-MA) who is on a mission to ensure both broadband (high speed) Internet service and equipment is more accessible to people with disabilities, along with video devices. Markey’s 21st Century Communications and Video Accessibility Act (HR 3101) will require equipment –– including hardware and software –– as well as Internet services to be accessible unless it would be an “undue burden. The bill also authorizes regulations for closed captioning and video descriptions.

Markey’s bill aims to enact recommendations of the National Broadband Plan issued by the Federal Communications Commission earlier this year. See http://www.broadband.gov/. The plan states that “The FCC should ensure services and equipment are accessible to people with disabilities.” It calls on the federal government to be “a model for accessibility” and says that it must “promote innovative and affordable solutions to ensure that people with disabilities have equal access to communications services and that they do not bear disproportionate costs to obtain that access.” The plan also calls on the Department of Justice to amend regulations under the Americans with Disabilities Act to make commercial Websites accessible.

Because many people with disabilities cannot afford to buy sophisticated accessible electronic equipment, the bill also expands the ability of people with disabilities to obtain federal subsidies for advanced communications services and specialized equipment.

We support Markey’s initiatives to bring attention to a problem that will only become greater as technology expands. It’ll take a push from all of us to really spark change. Sure, accessibility of our built environment is one facet to our freedom. But don’t be fooled: accessibility to computers, Internet and video, and other electronic devices has already started to become a major factor to our freedom and independence. We will not be left out in the cold!

If you have had trouble with access to internet services – and the equipment necessary to use it – or with access to video, please tell us about it by commenting below. Your stories can make a big difference in Washington.

Peggy Hathaway
VP - Public Policy
United Spinal Association/National Spinal Cord Injury Association

At the start of the health reform process, Congressional leaders had said that long-term services and supports would not be included in health reform. After hearing from the disability community, however, some legislative champions took up the issue and long-term services and supports were included in health reform.

Background on the Community First Choice Option:

The final health reform included the Community First Choice Option. The Option allows state Medicaid plans to choose home- and community-based services and supports as the rule, rather than the exception, for Medicaid-eligible individuals with disabilities with incomes up to 150% of the Federal Poverty Level, who would otherwise require institutional care. To encourage states to choose this option, states that opt in will receive an additional 6% to the federal government’s share of Medicaid costs (referred to as the Federal Matching Assistance Percentage or FMAP) for five years.

The Community Choice Act would make sure that people with disabilities were given the opportunity to live in their homes and receive supportive services rather than being forced in to an institution. We along with most (if not all) disability groups support full enactment of the Community Choice Act.

The Community First Choice Option is not perfect, but it is a step in the right direction. The Community First Choice Act is the better piece of legislation – however, Congressional leaders, including Pelosi and others who traditionally advance disability rights causes, felt that they could not garner enough support for its passage.

WHAT’S THE BEST WAY TO ADVOCATE?

Andrew Morris
Director of Public Policy
United Spinal Association/National Spinal Cord Injury Association

The ADA provides for access to the courts for disabled victims, but only if such access is reasonable. I am working with a TBI / spinal cord injury victim who has been excluded from court because he is only able to participate for 4 hours per day (according to medical affidavit). The court has refused accommodation via a reduced day court session, and has gone as far as signing an Order that the legally disabled victim will not have access to the court until they can prove they are no longer disabled. I am trying to establish what is considered ‘reasonable accommodation’ in other state courts. Any help would be appreciated.

Although the news media has moved on from the health care debate, many organizations and agencies are looking at “cost-effectiveness comparisons” in health care. This effort, is what many people believe, is our best chance to bring down the growth in health care expenses.

The NY Times this Sunday, had a comparison of the health care cost and outcomes between the USA and other countries. We spend the highest percentage of our GDP by far, than another countries, but have no better, or even have worst results in many health care measurements, like cancer deaths, and infant mortality. The main reason is we pay a great deal to correct problems when they happen, and we have a payment system that pays for procedures, but not for prevention.

I run up against this with my work with standing products. The insurance company will sometimes not pay for a stander when the client needs one to preserve or improve their range of motion, but they will pay for the wound care from poor sitting in the wheelchair or from the poor positioning in bed resulting from the contractures. Or often they will pay for pain medication, but may deny the person the ability to stand to alleviate pain.

The cost of wound care or pain medication will be more expensive in the long run, besides much more of a hardship on the individual, but our health care system is set up to pay only for the hole in the patient, not for the whole patient.