Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Disability Life In Ten Years: Fears And Hopes For 2030

Andrew Pulrang  - Dec 29, 2019, 04:24pm

 

As we start a new decade, we can see hopeful signs of improvement for people with disabilities. At the same time, it’s hard not to notice more negative trends — evidence that in some ways we may be heading in the wrong direction on disability issues and culture.

What will life be like for disabled people ten years from now? Will today’s worrying trends turn into frightening realities? Or will we finally achieve some of the access, equality, and opportunity breakthroughs we have been working on for decades?

Let’s first look at three ways things could end up much worse for disabled people in 2030, given current trends:

 

1. Division

The disability community could become even more bitterly divided than it is already — by race, gender, and sexual orientation, between “haves” and “have-nots,” among conflicting political identities, and between groups of people with different kinds of disabilities.

Disability is an incredibly diverse set of experiences, encompassing physical, cognitive, sensory, and emotional impairments and hundreds of specific diagnoses. And disability itself intersects with all other flavors of human experience and social identity. Despite this, the overall trend over the last 30 years has been for the disability community to come together as much as possible. Cooperation has contributed to historic advances, and these advances have in turn helped reinforce the value of unity.

Yet even now, we see that external threats and zero-sum, “circle the wagons” thinking threaten to overwhelm the drive for solidarity, shared experience, and collective action. It would be tragic for the disability community, (such as it is), to once again shatter into competing and mutually resentful camps … tragic, but entirely possible.

2. The sinister side of innovation

Medical and technological advances could increasingly make disability seem like something people can choose to fix, and should — further stigmatizing people with more persistent, ongoing disabilities.

Many people, including many with disabilities, view innovations in medicine, technology, and wellness as hopeful opportunities to cure and essentially conquer disability itself. It’s a major component of technological utopianism, the belief that ever-advancing technology holds the key to fixing our most difficult social problems. And it’s true that technology has done a lot to liberate disabled people, through better wheelchairs and prosthetics, relatively cheap adaptive products, and of course computers and the internet. Medicine, too, is largely responsible for vastly improved everyday health and longevity for people with disabilities that once cut lives short.

 

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WATCH: One-on-one with Trump’s Medicare and Medicaid chief Seema Verma

Health Dec 23, 2019 6:07 PM EST

 

Seema Verma, administrator for the Centers for Medicare and Medicaid Services, sat down for a rare one-on-one interview with PBS NewsHour special correspondent Sarah Varney.

They discuss her views on President Donald Trump’s plan for sustaining public health insurance programs, how the administration would respond if Obamacare is struck down by the courts in the future, and her thoughts on how the latest Medicare for All proposals would impact access to care and innovation.

This interview was produced in collaboration with partner Kaiser Health News.

Sarah Varney: Thank you, Administrator Verma, for joining us. We really appreciate it. You spoke recently about this need to protect Medicaid as a lifeline, but also not to have people be entrapped, or trapped on Medicaid and come to rely upon it too greatly. So, as I was mentioning, we were in Tennessee recently, and I know you can’t speak to specific cases —

Seema Verma: Mmm, hmm.

Sarah Varney: But, we did find a number of families who had been disenrolled, and then found it quite difficult to get back on. And I just wondered if there is a danger in taking this approach where there’s more frequent verification checks, a real focus on eligibility verification, that it could discourage some parents and kids who might be eligible for the program from signing up?

Seema Verma: Well, our top priority is making sure that the beneficiaries in the Medicaid program have high quality, accessible care, and we want to do everything that we can to improve the quality of their lives. In terms of the enrollment process, we also have an obligation to taxpayers to make sure that only the people that qualify for the programs are participating. And we also want to make sure that the programs are sustainable over the long term. I think there’s a balance between making sure it’s easy for people to apply, but we also have to make sure that we do the appropriate work to make sure that they qualify for the programs.

 

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MiABLE Winter Updates 2019 - from the Michigan Department of Treasury

 

Did you know Michigan offers a state tax deduction for contributions to your MiABLE account?

Michigan state income taxpayers can claim up to a $5,000 deduction for single filers and $10,000 for joint filers for MiABLE contributions. Savings in a MiABLE account grow tax-free, and distributions – including any earnings – are not taxed if used for qualified disability expenses.

So, before 2019 comes to a close, encourage your loved ones to make a contribution to your MiABLE account!

The Michigan Department of Treasury is pleased to announce that the MiABLE 529 Disability Saving/Investment Program has surpassed $13 million in assets. Over 3500 accounts have been opened since MiABLE first began enrollment November 1st, 2016 as the fifth ABLE program in the United States.

The ABLE Act allows certain individuals with disabilities to save/invest without jeopardizing eligibility for public benefits like SSI, Medicaid, and SNAP. 

 

Assets in an ABLE account can be used for qualified disability expenses (QDE) including:

• education  
• housing  
• transportation
• employment training and support
• assistive technology
• personal support services
• health care, illness prevention, medical equipment, and overall wellness
• financial management and administrative services
• legal fees
• expenses for oversight and monitoring
• end of life expenses

MiABLE account holders can request debit cards to pay for Qualified Disability Expenses.

 

Staff have been educating parent groups, disability advocacy organizations, employee resource groups, and other potential MiABLE account holders throughout the state. 

Request for events can be directed to [email protected] 

Details on MiABLE events can be found at https://www.miable.org/Events.php

Questions about the MiABLE program can be directed to Customer Service at 844-656-7225

Open an account or Contribute/Donate to an opened account at www.miable.org

 

 

 

Epilepsy Foundation Was Targeted in Mass Strobe Cyberattack

By Manny Fernandez - Dec. 16, 2019

 

Hackers sent videos and images of flashing strobe lights to thousands of Twitter followers of the Epilepsy Foundation last month in a mass cyberattack that apparently sought to trigger seizures in those with epilepsy, the foundation said on Monday.

The series of online attacks was particularly reprehensible, it said in a statement, because it took place during National Epilepsy Awareness Month.

“These attacks are no different than a person carrying a strobe light into a convention of people with epilepsy and seizures, with the intention of inducing seizures and thereby causing significant harm to the participants,” said Allison Nichol, director of legal advocacy for the nonprofit foundation, which finances epilepsy research and connects people to treatment and support.

The foundation reported 30 such attacks in the first week of November, and said it had filed complaints with law enforcement authorities, including with the United States Attorney’s Office in Maryland, where the group’s headquarters are. It was unclear how many people clicked on the videos and animated images known as GIFs.

Cyberattacks intended to trigger harmful seizures in those with epilepsy have become more common in recent years, particularly after a Texas author was targeted in 2016.

In that attack, John Rayne Rivello, a Marine Corps veteran from Maryland, was accused of using Twitter to send a GIF with a blinding strobe light to an epileptic author, Kurt Eichenwald, who had written critically about Donald J. Trump and his supporters during the 2016 presidential campaign.

 

 

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AHRC Observes International Human Rights Day- December 10

 

The American Human Rights Council (AHRC-USA) joins the world’s community in recognizing and observing the International Human Rights day on December 10. Nations that are members of the UN are bound to respect human rights enshrined in the Charter and in the Declaration.

This year as we celebrate Human Rights Day with millions of people denied these basic rights enshrined in the Declaration. Everyone is entitled to these basic human rights. The issue of human rights is not a partisan or ideological issue and violations of human rights are to be condemned no matter the identity of the violator or the identity of the victim. The continued human suffering and its increase is a painful reminder to all nations that the state of human rights across the world in general is not good and requires renewed commitment to live up to the spirit and the letter of the Universal Declaration of Human Rights. All people are equal. Human rights are not selective nor its value determined by a person’s race, color, faith or nationality.

In 1950, December 10 was proclaimed by the United Nations General Assembly as a Day for Human for Human Rights to help advance the much needed attention regarding the state of human rights across the globe. On December 10, 1948; the United Nations General Assembly adopted the Universal Declaration of Human Rights (UDHR). In 1950, the United Nations General Assembly passed resolution 423(V) to officially recognize December 10 as Human Rights Day around the world.

This proclamation is meant to recognize the birth of Universal Declaration of Human Rights. December 10 is the day all human rights organizations and nations of the world celebrate the United Nation Universal Declaration of Human Rights. The Declaration has thirty articles that include: Article 15 “Right to nationality: You have the right to belong to a country and have a nationality. Everyone has the right to a nationality. No one shall be arbitrarily deprived of his nationality nor denied the right to change his nationality.”

This year as we celebrate Human Rights Day with millions of people denied these basic rights enshrined in the Declaration. Everyone is entitled to these basic human rights. The issue of human rights is not a partisan or ideological issue and violations of human rights are to be condemned no matter the identity of the violator or the identity of the victim.

On the Day of Human Rights, AHRC calls upon all nations, groups and individuals to fully respect the Declaration of Human Rights and to live by it. In this International Human Rights Day, let us continue to work together to develop and nurture in future generations a culture of human rights.

“International Human Rights day comes amidst a world torn by wars and conflicts where violations of people’s basic human rights is on the rise,” said Imad Hamad, AHRC Executive Director. “This increase in human rights violations at home and abroad continue to be met with double standards, political hypocrisy and selective definitions to justify such violations,” added Hamad. “All nations across the globe must respect and honor their own declared commitment to respect and protect human rights in their perspective countries, today is a call to action,” concluded Hamad.

On the Declaration: http://www.ohchr.org/EN/UDHR/Pages/UDHRIndex.aspx

Simplified version of the Universal Declaration of Human Rights for children: https://www.youthforhumanrights.org/what-are-human-rights/universal-declaration-of-human-rights/articles-1-15.html

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#AHRC #AHRCUSA #pressandguide #HumanRightsDay #ImadHamad #HumanRights #SharedHumanity

 

 

 

“State as a Model Employer” - ODEP News Brief

 

 

“State as a Model Employer”

Members of the State Exchange on Employment & Disability (SEED), including partners from the National Conference of State Legislatures (NCSL), and the Council of State Governments (CSG), hosted a convening of Washington state government agency representatives to highlight best practices and policies around State as a Model Employer. They also revisited the team’s policy action plan that was developed during a SEED policy assistance convening over the summer. Afterward, SEED met with Lt. Gov. Cyrus Habib and state legislators to discuss the action plan and provide examples of effective policies and programs that can help reduce barriers to employment for Washingtonians with disabilities.

• Learn more about SEED
• View additional resources from NCSL
• View additional resources from CSG

 

 

 

 

NAELA Federal Advocacy Committee : Fw: Reps. Sánchez and Schakowsky Introduce Legislation to Protect Elderly Nursing Home Residents

 

Reps. Sánchez and Schakowsky Introduce Legislation to Protect Elderly Nursing Home Residents

Washington, DC – U.S. Representatives Linda T. Sánchez (D-CA) and Jan Schakowsky (D-IL) today introduced the Fairness in Nursing Home Arbitration Act to protect the legal rights of elderly Americans. This legislation would prohibit long-term care facilities from requiring or soliciting residents to enter into pre-dispute, mandatory, binding arbitration agreements.   Rep. Linda Sánchez – "This legislation is about putting patients and families first. The decision to transfer a parent or loved one to a long-term care facility is heart-wrenching. I still remember the day we moved my late father into a nursing home. My family and I were focused on the quality of care and range of services the facility would provide him. We were not focused on the language in the agreement that would limit his rights should something go wrong. Under this bill, families will no longer have to worry about losing their right to a day in court. I urge my colleagues to join me in protecting one of our most vulnerable groups in society, the elderly."   Rep. Jan Schakowsky – "Every day, families bring their loved ones to nursing homes all around the country, certain that they will receive the high-quality care and comfort they need. Unfortunately, many of them unknowingly sign away their right to seek justice and are forced into an often unfair arbitration process should a nursing home resident be harmed. Whether it's willful neglect or a simple accident, residents and their families should have the right to seek justice in front of a judge and jury, and not be locked into a conference room for forced arbitration."   Full bill text available here .   This legislation is endorsed by: AARP  California Advocates for Nursing Home Reform Caring Across Generations Center for Medicare Advocacy Justice in Aging Long Term Care Community Coalition (LTCCC) National Academy of Elder Law Attorneys National Association of Local Long Term Care Ombudsman (NALLTCO) National Association of Social Workers (NASW) National Association of State Long-Term Care Ombudsman Programs (NASOP) National Consumer Voice for Quality Long-Term Care Public Citizen Service Employees International Union (SEIU)   Rep. Sánchez first introduced the Fairness in Nursing Home Arbitration Act in the 110th Congress after hearing numerous testimony during her time as Chairwoman of the House Judiciary Committee's Subcommittee on Commercial and Administrative Law.   AARP Senior Vice President of Government Affairs Bill Sweeney – "When individuals and their families make the difficult decision to enter a nursing home, often in emergency situations, they should not be forced to sign away their legal rights through mandatory arbitration agreements. AARP supports the Fairness in Nursing Home Arbitration Act because it would prohibit these fundamentally unfair contract provisions. In the heartbreaking cases where loved ones in nursing homes are abused or injured, they should not lose access to the judicial system. We thank Representatives Sánchez and Schakowsky for their important work on this issue."   American Association for Justice CEO Linda Lipsen – "Forced arbitration strips our nation's most vulnerable citizens of their legal rights when a nursing home corporation's negligence causes the injury or death of a patient. We applaud Rep. Sánchez for introducing the Fairness in Nursing Home Arbitration Act and ask Congress to act quickly to restore long-term care patients with their constitutional right to be heard by a judge and jury."   Long Term Care Community Coalition Executive Director Richard J. Mollot – "LTCCC believes pre-dispute arbitration agreements are inherently unfair to residents and families. When a resident enters a facility, they are not likely to be in a position to truly consider what future problems may occur. Most people are overwhelmed by the situation and trust that the nursing home is providing them with paperwork to sign that is both necessary and in the resident's best interest. Nobody knowingly enters a nursing home expecting that they will be abused or neglected."   Public Citizen Counsel for Civil Justice and Consumer Rights Remington Gregg – "We thank Rep. Sánchez for being a champion for seniors. If seniors are injured, abused, or otherwise harmed, they and their families should have peace of mind that they will be able to hold corporate wrongdoers accountable in court and receive the justice they deserve."   Center for Medicare Advocacy Policy Attorney Dara Valanejad – "Too often, nursing home residents and families enter into pre-dispute arbitration agreements in the midst of physical and emotional crises. The Fairness in Nursing Home Arbitration Act of 2019 will ensure that long-term care residents and those in community-based settings are not forced, coerced, or "requested" to waive their right to court proceedings before a dispute even arises. Our nation's most vulnerable individuals deserve to be protected from these pre-dispute arbitration agreements."   National Consumer Voice for Quality Long-Term Care Director of Advocacy & Outreach Robyn Grant – "The National Consumer Voice for Quality Long-Term Care thanks Congresswomen Sánchez and Schakowsky for their leadership in protecting nursing home residents and individuals receiving Medicaid-funded home and community -based services from forced pre-dispute arbitration agreements. Such agreements are fundamentally unfair to consumers of long-term services and supports in any setting. They pressure people to decide how to settle a dispute - which could involve gross negligence, abuse, or even death - before a dispute arises and without any information about the dispute. Once signed, the individual loses forever their constitutional right to pursue action in a court of law. These agreements take advantage of consumers at their most vulnerable and stack the deck against them by frequently allow the long-term care provider to select the arbitrator, the rules for the arbitration process, and where the arbitration will be held. But pre-dispute arbitration agreements harm more than the individual who is seeking justice and accountability. Because the agreements usually are confidential, the public, including those looking for a nursing home, will never know the nursing home's full track record - no matter how bad - because it is hidden. We applaud both Congresswomen for their commitment to ending this shameful practice and upholding the rights of vulnerable individuals in need of care."   ###   Rep. Linda T. Sánchez represents California's 38th congressional district. She is a senior member of the Ways and Means Committee and served as Vice Chair of the House Democratic Caucus in the 115th Congress and Chair of the Congressional Hispanic Caucus in the 114th Congress.

 

Bazelon Center and Disability Rights Maryland Comment on Recent Baltimore Public Health System Gap Analysis

 

On November 1, the Bazelon Center for Mental Health Law and Disability Rights Maryland (DRM) jointly submitted comments on a report analyzing gaps in Baltimore, Maryland's behavioral health system. "The Baltimore Public Health System Gap Analysis - Final Report, October 2019" is a requirement of the 2017 Consent Decree between the U.S. Department of Justice and the City of Baltimore, Maryland, and the Baltimore Police Department (BPD). The Consent Decree resolves the Justice Department's claims that the BPD violates the constitutional and civil rights of Baltimore residents, including people of color and people with disabilities, through the excessive use of force; racially discriminatory stops, searches, and arrests; and the failure to make reasonable accommodations when responding to calls involving people with disabilities and in crisis. The "Gap Analysis" recommends that Baltimore expand and enhance services available in its public health system, to help reduce unnecessary and inappropriate interactions between BPD officers and people with disabilities, in Baltimore predominantly Black and Latinx people with disabilities. Bazelon and DRM believe the report's recommendations are sound overall, and make four suggestions for implementation.

 

The Baltimore Public Health System Gap Analysis - Final Report, October 2019

 

Bazelon Center and Disability Rights Maryland comment letter 

 

U.S. v. Baltimore 2017 Consent Decree

 

 

 

PEKD & Associates December 2019 Newsletter

 

PEKD & Associates December 2019 Newsletter 

 

Download December 2019 Newsletter

 

 

 

 

Attacks on Greta Thunberg expose the stigma autistic girls face

Trump’s tweets about the climate activist are part of a pattern.

By Anna North  Updated Dec 12, 2019, 10:53am EST

 

 

Greta Thunberg was named Person of the Year by Time magazine this week for her forthright, uncompromising climate activism that has captured the world’s attention.

President Trump wasn’t happy. Calling the choice “ridiculous,” the president griped that the 16-year-old activist should “work on her Anger Management problem, then go to a good old fashioned movie with a friend.”

 

It was a near replay of his response in September, when Thunberg charged the audience at the United Nations Climate Summit with stealing “my dreams and my childhood with your empty words.” At that time, Trump tweeted sarcastically that Thunberg seemed like “a very happy young girl looking forward to a bright and wonderful future.”

Both tweets are part of a pattern — others on the right have also mocked and dismissed Thunberg, with conservative commentator Michael Knowles calling the 16-year-old activist a “mentally ill Swedish child” on Fox News in September. Knowles appeared to be insulting Thunberg for having Asperger’s syndrome, an autism spectrum disorder. Autism isn’t a mental illness — it’s classified as a developmental disability. But advocates say that attacks like the ones Thunberg has faced are all too familiar for autistic people.

“The go-to way to dismiss what an autistic person is saying in our society is to point out that we are autistic,” Julia Bascom, executive director of the Autistic Self Advocacy Network, told Vox in an email.

 

Thunberg may experience especially strong stigma from the right because she’s not just autistic, but also female. “Autistic girls tend to face a lot of pressure not just to act like non-autistic people, but also to live up to the same gendered expectations many girls face,” Bascom said. “We always have to be smiling and compliant.”

What Thunberg faces is a reminder of the combined ableism and sexism many autistic girls and women have to deal with, Bascom says. But Thunberg, who has said her Asperger’s can be “a superpower,” appears undaunted by her critics. And her leadership on the climate crisis could help fight prejudice against autistic people as well.

 

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