Should the ADA Be Weakened?

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The US House is deciding tomorrow or Thursday whether or not to weaken the Americans with Disabilities Act. The ADA Education and Reform Act, or H.R.620 is scheduled for a vote in the next day or two. Please contact your congressional representative immediately and let him or her know your feelings. For more information on the ADA, please visit the ADA National Network.  The DisabilityScoop article is also helpful.

Anyone know the story behind HR 620 being introduced?

From Heather Ansley, Associate General Counsel for Corporate and Government Relations, Paralyzed Veterans of America; Jennifer Mathis, Director of Policy and Legal Advocacy, Bazelon Center for Mental Health Law, and Vania LeveileSenior Legislative Counsel, American Civil Liberties Union, we get this take:



Here is the bill itself:



For you legal eagles, here’s the current ADA.

NORD Statement on Proposed Medicaid Changes

The National Organization for Rare Disorders (NORD) has been reviewing the Section 1115-based Medicaid  waivers coming in from the states. They and we have serious concerns. With the Peer Network’s high dependency on Medicaid, there are potentially serious ramifications. You can find NORD’s online statement here. Here is the full text of the release:

“In an attempt to control health care costs and improve services for Medicaid beneficiaries, states have sought Section 1115 waivers that would enable them to make substantial changes to Medicaid benefits and eligibility. We at the National Organization for Rare Disorders (NORD) understand the need for states to consider creative policy solutions to improve health care quality and access. However, we have grave concerns that many of the current state proposals will have a detrimental effect on the rare disease community.

Section 1115 Waivers enable the Federal Government to approve state-administered demonstration projects that the Centers for Medicare and Medicaid Services (CMS) determines to be of benefit to the objectives of the Medicaid program. These projects waive certain Medicaid requirements and allow a state to direct federal Medicaid funds in ways that would otherwise not be permitted. If enacted, NORD believes that several of the current proposals would restructure Medicaid benefits and eligibility in a way that undermines the purpose of the program and disproportionately affects people with rare diseases.

First, multiple states have proposed to implement “commercial-style” formulary restrictions in Medicaid programs that would limit coverage for new therapies approved by the Food and Drug Administration (FDA). NORD opposes any formulary restrictions that cut access to vital orphan therapies. Restricting drug benefits would limit the ability of providers to make the best medical decisions for their patients. This could inordinately affect rare disease patients because they disproportionately rely on the new and innovative medicines these states are aiming to restrict. Rare disease patients deserve the same access to life-improving, even life-saving, medications as everyone else, and these harmful proposes will disproportionately impact rare disease patients and their families.

Second, many states are proposing to add work requirements to their Medicaid programs. On January 11, CMS released a letter to Medicaid Directors signaling its support for work requirements. The following day, CMS approved Kentucky’s 1115 waiver, the first approved waiver to include work requirements.

NORD opposes the implementation of work requirements, as we believe the exemptions to these requirements will not adequately address the complex health challenges facing rare disease patients. With a scarcity of physicians familiar with rare diseases and the prevalence of undiagnosed conditions, it is often difficult, even impossible, for rare disease patients to convey the extent of their symptoms in a way that satisfies state requirements. Forcing patients to justify their inability to maintain a consistent work schedule before they can receive or continue to receive care could result in a devastating loss of coverage throughout the rare disease community.

Third, there are some states that have proposed tying work requirements to lifetime limits on Medicaid coverage. NORD strongly opposes lifetime limits to healthcare coverage under any circumstance. Lifetime limits disproportionately harm individuals with rare diseases due to the often genetic, life-long nature of their disease, as well as the incredibly expensive therapies and orphan drugs used to treat them. Rare disease patients who are subjected to work requirements would suddenly find themselves entirely without coverage, regardless of whether they have adhered to the work requirements.

Finally, states are debating a number of proposals that reduce eligibility and benefits for those with incomes at or around 100 percent of the Federal Poverty Level (approximately $12,140 per year for an individual). Such proposals to weaken access to specialists or other critical services in Medicaid would be exceptionally detrimental to individuals with rare diseases, as continuity of care is essential to effective treatment. Consequently, NORD opposes any proposal that would considerably weaken healthcare coverage for any population of rare disease patients.

These concerns are not exhaustive, but they are representative of the ways in which the rare disease community might be harmed by some of the emerging proposals to control costs. Medicaid exists to be a safety net for those who cannot access other forms of health care coverage. Substantially altering the program in ways that reduces benefits for people in need is not only diametrically opposed to the purpose of the program, but it will serve to worsen heath care outcomes and increase costs for rare disease patients and their caregivers. As the leading representative of the rare disease patient community, NORD will continue to engage with states on the best way to improve health care through the Medicaid waiver process.”

About NORD

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 260 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

An Apology

We are sorry for all the weird updates. In trying to meet the increasing needs of our members, we made a technical change to our website. The developer did not tell us it would create so many notifications. We are learning to ask questions before the changes happen.

WikiImages / Pixabay

Thank you for your trust. Again, we are sorry for the trouble.

Seeing Each Other

One of my coaches shared the Thomas Hübl video (below) with me. As I watched it, thoughts of the Peer and Caregiver Networks flooded my mind. While we have yet to announce Network Coaching, this sense of seeing each other is what I think is at the heart of that work. Here’s a version of this understanding with which you might be familiar:

Here’s Thomas Hübl’s take:

We need each other.

ALL of Our Emotions

Our emotions are a form of intelligence. Over and over again we have seen the lauding of some and condemnation of others. It’s tragic. Hans F. K. Günther and the rest of the Nazis lauded “Nordic” characteristics and tried to destroy others. Our emotions are no less part of us than our eye color, hair color, and body shape and function. We want to listen to them, not silence them.

In short, our feelings help us understand what’s going on in our lives.

This appreciation of our emotions is critical for the Peer and Caregiver Networks. We need the guidance they give us. Finally, someone has taken the trouble to do the research. We are grateful for Susan David‘s work. Her courage can help us appreciate the gifts our emotions are to us.



The Peer Network, those living bodily with spina bifida, are at much higher risk of social isolation. TISBI is initiating research to understand the extent of this aloneness. This TED Talk (video below) discusses how being separated from others is deadly. We will have many articles on this topic.

A Peer Network Video

Who can help us produce a video to reach the Peer Network? This is the level of grip and quality that we want:

Suicide prevention is huge — and so are the lives of the Peer Network. Google is selling the Pixel 2. We are “selling” the Peer Network to itself. More than selling, though, it’s validating.

Which Are Real Disabilities?

Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.

Fred Rogers

Feeling the Needs

About 4 million people are watching Katie right now. Funny that neither she nor they are consciously aware of the attention.

Many, many needs of the Peer Network have been deferred, most for very good reasons. However, unmet needs don’t really care if the reasons are good or not. They remain unmet.

And things are changing. We are witnesses of the turning to these needs. It is coming down on Katie harder than anyone else at the moment. She’s feeling it. The formation of The International Spina Bifida Institute is no small matter in millions of lives. We are all feeling it. How? We are all parts of networks — and the networks are a part of us.

We hope you will join us in seeking to understand and address the needs of the Peer Network and those of the Caregiver and Professional Networks. Many hands makes light(er) work.