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People with Disabilities Need SMUP Designation. What is SMUP?

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The National Council on Disability (NCD), a presidentially-appointed council, has written that the foundation of a person’s ability to live, learn, work, and earn, is to have and maintain good health that encompasses mental, physical, and overall well-being.  But there are great disparities in the health care system for people with disabilities to prevent this. To begin to correct some of these disparities, the NCD calls for us to be designated SMUPs.  These are not little blue people! 

Let’s look at why the NCD wants this designation before explaining what SMUPs are.

“For people across all categories of disabilities, attaining and maintaining good health has been elusive,” the NCD wrote in a recent report. The “unwelcoming healthcare system….for decades has failed 26% of the United States population, so much so that people with disabilities utilize the healthcare system for disease management instead of disease prevention.” People with disabilities “can even view the healthcare system as a source of potential harm.”

“It is a paradigm that exists as a result of avoidable systemic barriers within our healthcare system,” stated the NCD.

Some of NCD’s findings are:

If you are a person with a physical, intellectual, or developmental disability, your life expectancy is less than that of someone without disabilities.

You are more than three times as likely to have arthritis, diabetes, and a heart attack.

You are five times more likely to report a stroke, Chronic Obstructive Pulmonary Disease, and depression. 

You are more likely to be obese.

You are significantly more likely to have unmet medical, dental, and prescription needs.

If you are a woman with a disability, you are likely to receive poorer maternity care and less likely to have received a Pap smear test or a mammogram.

If you are a pregnant woman with a disability, you have a much higher risk for severe pregnancy- and birth-related complications and eleven times the risk of maternal death.

If you are an adult who is Deaf or hard of hearing, you are three times as likely to report fair or poor health as compared to those who do not have hearing impairments.

If you have an intellectual disability, it is the strongest predictor for COVID-19 infection and the second strongest predictor for COVID-19 death.

If you live in a rural area, your disability appears to further worsen barriers to accessing healthcare.

These disparities are exacerbated if you are a person with a disability and a person of color.

NCD’s proposed solution to combat the institutional barriers in the health care system is NCD’s Health Equity for People with Disabilities Framework.

Through its research, collaboration with experts, and consultation with members of the disability community, NCD’s findings reveal five primary policy issues to build upon the advancement of health equity for people with disabilities.  Drumroll, please!

They include:

  1. Designating people with disabilities as a Special Medically Underserved Population (SMUP) under the Public Health Services Act;
  2. Designating people with disabilities as a Health Disparity Population under the Minority Health and Health Disparities Research and Education Act;
  3. Requiring comprehensive disability clinical-care curricula in all US medical, nursing and other healthcare professional schools and requiring disability competency education and training of medical, nursing and other healthcare professionals;
  4. Requiring the use of accessible medical and diagnostic equipment; and
  5. Improving data collection concerning healthcare for people with disabilities across the lifespan.

The first component requires congressional action in terms of passing legislation.  Of course, that rang my advocacy alert bells. 

To achieve health equity for people with disabilities, it is critical that people with disabilities be legally identified as a Special Medically Underserved Population (SMUP) under the Public Health Service Act, with the corresponding benefits associated with that designation.  Medically Underserved Population designations require population groupings based upon geography. This is not an applicable means of providing equitable healthcare to the national community of people with disabilities. To get around this technicality, people with disabilities must be designated by Congress as a Special Medically Underserved Population through a revision of Section 330 of the Public Health Service Act.

A copy of NCD’s latest report on this issue, where all of the above information was excerpted. can be found here.

I will be following this issue and will be connecting with Project Freedom’s congressional contingent (Reps. Chris Smith, Andy Kim, and Jeff Van Drew: Senators Robert Menendez and Corey Booker) to make them aware of this issue.  Watch for future updates. 

“Work Until You Die” Is Not a Retirement Plan

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By Rebecca Cokley, The Nation, March 10, 2023

The disability community is reeling this week over the passing of Judith Heumann. Judy, a polio survivor, spent most of her 75 years advocating for the rights of people with disabilities, in school, in employment, in foreign policy, in the United States and globally. She served in both the Clinton and Obama administrations, and pioneered roles at the World Bank and the Ford Foundation. But the reality is that Judy, like so many disabled people, had to work until her death to maintain the quality of life that she needed to stay in the community and avoid being forced against her will into an institution or nursing home.

As Rebecca Vallas at the Disability and Economic Justice Collaborative says, “Disability is a cause and consequence of poverty.” Rules and regulations regarding Social Security, the Fair Labor Standards Act, the Workforce Investment Act, and Medicaid govern every decision people with disabilities can make about their economic status, from what college to attend to whether to marry.

Research from the National Disability Institute shows that households with a person with a disability that their ability to work have approximately $17,000 in additional annual expenses than a comparable household without a person with a disability. People with disabilities experience poverty at twice the rate of nondisabled people. The disability community experiences higher levels of homelessness, food insecurity, and unemployment than people without disabilities. And before the global pandemic, more than 10,0000 people with disabilities died in one year while waiting for benefits approval. Not surprisingly, these statistics become even more stark when incorporating race, gender, and 2LGBTQIAP identities.

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Nation’s Disability Services At Breaking Point, Report Finds

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by Michelle Diament. DisabilityScoop.com, March 2, 2023

After warning for years of an impending collapse in the disability services system, advocates say that the crisis is here with a new report painting a dire picture of the situation across the country.

Programs are closing, people with developmental disabilities are being turned away and providers are failing to meet federal requirements, according to the analysis out this week from United Cerebral Palsy and the American Network of Community Options and Resources, or ANCOR.

The annual report known as the “Case for Inclusion” assesses 80 indicators of how well states are supporting individuals with intellectual and developmental disabilities in the community.

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Employment Of People With Disabilities Hits Record High

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by Shaun Heasley, DisabilityScoop.com, March 3, 2023

he employment rate for Americans with disabilities has reached an all-time high, federal officials say.

Among people with disabilities nationally, 21.3% had a job in 2022. That’s up from 19.1% the previous year and represents the highest rate on record since the government began tracking such data in 2008.

The snapshot of disability employment last year comes in a new report issued by the U.S. Department of Labor’s Bureau of Labor Statistics. The agency collects data on people with disabilities in the job market as part of its Current Population Survey, which polls 60,000 households each month about employment and unemployment.

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Disabled Voters Struggle for Help With Ballots Amid Confusion

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Five months after a federal court reaffirmed that voters with disabilities are entitled to receive help with their ballots, not all local Wisconsin election officials are clear about the rules on helping residents to vote.

 By Mitchell Schmidt, The Wisconsin State Journal, Feb. 21, 2023 

(TNS) — It’s been more than five months since a federal court reaffirmed that voters with disabilities are entitled to receive help mailing or delivering absentee ballots, but lingering confusion among some local election officials has left some voters facing continuing barriers to their right to vote.

“What’s especially concerning is that we have heard and seen examples from several municipalities where the clerk actually included instructions along with the absentee ballot that said only the voter can return their ballot,” Disability Rights Wisconsin spokesperson Barbara Beckert said earlier this week. “Most voters are going to see that and accept that, ‘Well, I guess I can’t have someone assist me with returning my ballot so I guess I’m not going to be able to vote.'”

The federal Voting Rights Act allows voters with disabilities to receive assistance as long as the person helping them isn’t the voter’s employer, an agent of that employer, or an officer or agent of the voter’s union.

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What I’ve learned being reliant on a caregiver

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Opinion by Alice Wong, via CNN.com, February 22, 2023

Editor’s Note: Alice Wong is the founder of the Disability Visibility Project and author of “Year of the Tiger: An Activist’s Life.” She tweets @SFdirewolf. The views expressed in this commentary are her own. View more opinion on CNN.

CNN — Last June I spent a month in the ICU due to several medical crises that left me in a weakened state without the ability to eat or speak. When I was discharged, there were numerous urgent concerns: finding caregivers to help me with intensive health care needs around the clock, staying on top of all of my medical appointments, being able to communicate, and affording all of the out-of-pocket supplies and additional private-pay care I needed. I was fortunate to have a friend who launched a crowdfunding campaign to help with some of those out of pocket costs.

My family and I worked hard to find a set of four private pay caregivers to supplement the care they already provide for me. But with any employer-employee situation, things can happen accidentally or at the last minute that throw a wrench in an employee’s work day. When your life is entirely in the hands of an employee those wrenches can have devastating consequences. One time a caregiver was supposed to start her shift at 7 a.m. and she never showed up. I was awoken by my dad around 8:30 a.m. after having laid in my feces for over two hours. I spent that day in a vortex of rage and despair – and it wasn’t the first time this happened with one of my caregivers.

What I did not do was report my caregiver to the authorities or fire her.

I am acutely aware of the power dynamics at play between a care provider and recipient, and the devaluation and lack of investment in care work, which is rife with low wages, unsafe working conditions, exploitation and abuse.

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Social Security Proposes Change To SSI Benefits

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by Michelle Diament, DisabilityScoop.com, February 21, 2023

The Social Security Administration is looking to make a big change to the way that it determines monthly payments for people with disabilities receiving Supplemental Security Income benefits.

Currently, SSI beneficiaries can see their payments docked — often by one-third — if someone else regularly provides them with meals or groceries. But under a new plan that would change.

In a proposed rule published this month in the Federal Register, the Social Security Administration said it wants to update its regulations to exclude food from the way it calculates what’s known as “in-kind support and maintenance.” In addition, the agency intends to tweak its definition of income to allow for this exception.

“We have historically included in-kind receipt of food in our consideration because food assistance helps people meet their basic needs. However, the complexities of our current food (in-kind support and maintenance) policies may outweigh their utility,” the Social Security Administration wrote in its proposal. “Moreover, the current (in-kind support and maintenance) policy may insert barriers into what would otherwise be an innocuous receipt of a meal or food from an individual’s friends or family. The current requirements for reporting in-kind food receipts could discourage SSI applicants and recipients from receiving an often informal but important form of help.”

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Would cameras make group homes for disabled people safer? Debate rages over privacy

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By Susan K. Livio | NJ Advance Media for NJ.com, January 29, 2023

Since 2018, Children’s Aid and Family Services has used video cameras to keep a close eye on the residents inside the 18 group homes it runs for people with developmental disabilities in north Jersey.

The Paramus-based nonprofit spent about $10,000 a home to install cameras in doorways, living rooms and kitchens and train employees what to do, or not do, when a resident is experiencing a behavioral crisis, said Melinda Iannarone Geraghty, the agency’s vice president for Disability Support Services. The video recordings are evidence when investigating a resident’s injury and an allegation of abuse.

States Struggle To Curb Fake Emotional Support Animals

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By Elaine S. Povich, Stateline | January 24, 2023

Numerous websites promise to qualify any pet as an emotional support animal that the sites claim can go nearly anywhere — inside restaurants and stores, into “no pets” apartments and throughout college dorms. The easily obtained certificates are making it tough for states to crack down on fake support animals without running afoul of federal fair housing or anti-discrimination laws.

Emotional support animals, which are supposed to help people overcome anxiety or other psychological ills, are different from “service animals,” which are trained to help people with disabilities navigate their surroundings or to warn owners of physical ailments such as low blood sugar.

There are specific criteria for service animals in state or federal law, mostly having to do with training or the performance of specific tasks, and the animals are protected by the Americans with Disabilities Act. Emotional support animals don’t have the same ADA protection.

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How California’s emergency plans fail disabled communities

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by Astra Lincon, High Country News/hcnn.org, January 23, 2023

Kelley Coleman was vacationing in Santa Barbara, California, when the evacuation order came. It was New Year’s week, and Kelley’s two sons, third and fifth graders in Los Angeles’ Studio City neighborhood, were enjoying the last of their school holidays. Aaron, 9, Coleman’s youngest — a boisterous, enthusiastic child — relished splashing around for hours in the Pacific’s briny, biting cold.

Rain was forecast that week, not unusual for January on that part of California’s central coast. For days, it drizzled. Then, late on the last day of their vacation, Coleman’s cellphone buzzed. It was an emergency notification: Heavier rains were coming, and with them possible flash floods, falling trees and landslides capable of tearing homes from their foundations. Residents across Santa Barbara County were told to evacuate.

Immediately, Coleman called the nearest pharmacist. If they were evacuated, she thought, how would they get Aaron his medication

Aaron is a medically complex child. In addition to taking a daily medication for epilepsy, he has a variety of sensory impairments and relies on a feeding tube. Coleman’s life is built around rituals of readiness: She keeps go-bags in the car, at school and at a neighbor’s house with backup tubes, formula and replacement parts for the port in Aaron’s stomach. But she cannot keep backup medication; the federal Food and Drug Administration’s policies for controlled substances prevent people from getting refills until their prescriptions have nearly run out. Coleman had refilled Aaron’s medicine just days ago, but the bottle was back home in Studio City.

Aaron had just two days’ worth of medication left, and the rains were falling harder.

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