“Nothing about us without us.”

This iconic disability phrase takes on new significance in terms of health research, as the NIH recently designated people with disabilities as a population with health disparities.

Although this may sound like a disappointing development, this designation enables healthcare researchers to address the difficulties many people with disabilities face in receiving timely and comprehensive healthcare. It allows medical researchers to include disabled people as a subgroup within larger research studies. This allows researchers to understand the unintended effects a medication, procedure, treatment, or policy may have on people with disabilities specifically. It will also hopefully create a space for people to self-advocate for inclusion in trials and treatments from which they are currently excluded. [continue reading…]

What if you had to choose between paying your rent and marrying your significant other? People with disabilities who receive Supplemental Security Income (SSI) are faced with this decision every day. The SSI Savings Penalty Elimination Act raises asset limits for SSI recipients and couples. This proposal, while simple, could have a significant impact on SSI recipients and their families. 

Individuals who receive SSI are each allowed to have $2,000 in assets (such as cash, stocks, and vehicles), but married couples are only allowed to have $3,000 in assets between the two spouses. The asset limit is less for couples than it would be if the two people chose not to marry. Furthermore, second cars (which most people take for granted) can easily put a married couple over the asset threshold. This policy results in many couples choosing to remain unmarried or even for married couples to get divorced in order to be allowed to own a second car or to save an additional $1,000 a month.

The SSI Savings Penalty Elimination Act partially addresses these issues by proposing that asset limits to qualify for SSI be raised from $2,000 to $10,000 for individuals, and from $3,000 to $20,000 for couples. This will be the first time that SSI asset limits have been raised since 1989 and aligns with projected inflation-adjusted asset limits. [continue reading…]

National Disability Employment Awareness Month (NDEAM) Spotlight  

Did you know that 44% of companies in the US don’t allow remote work? These companies are missing out on a reliable, skilled, and motivated talent pool, people with disabilities. Earlier this year, our Senior Policy Advisor, Matan Koch, moderated a webinar called Presenting the Business Case For Disability Inclusion Within Your Organization. This presentation highlighted the positive contributions that people with disabilities bring to an organization and is an excellent resource for companies looking to recruit from a diverse, underutilized talent pool. [continue reading…]

Elizabeth Kim to receive first-ever Ben Spangenberg and Justin Chappell Memorial Award at RespectAbility’s 10th Anniversary Celebration, sponsored by Wells Fargo

Justin Chappell and Ben Spangenberg

Los Angeles, October 17 – The national disability advocacy nonprofit RespectAbility is announcing that after the sudden passing of long-serving staff member, Ben Spangenberg, on September 29, 2023, the Justin Chappell Memorial Award has been renamed to honor Spangenberg alongside the person who first inspired this award, Justin Chappell. Spangenberg and Chappell were life partners, marrying in 2015 after marriage rights were extended to same-sex couples in all 50 states. Together, they advanced RespectAbility’s democracy and civic engagement work, spending several weeks in Iowa and New Hampshire interviewing presidential candidates in 2016. They met with all candidates, educating their campaigns on the importance of not only ensuring accessibility of events and materials but also creating thoughtful policies for helping people with disabilities achieve their goals and fully participate in their communities.

Spangenberg was a part of RespectAbility’s team since 2015, and from 2017 until his passing, served as the Senior Manager of RespectAbility’s National Leadership Program. Under his leadership, more than 200 Fellows graduated from the program, going on to careers in disability advocacy, on Capitol Hill, in philanthropy, and many other sectors. To honor Ben’s legacy of service, his family has requested donations in his memory to RespectAbility.

The newly renamed Ben Spangenberg and Justin Chappell Memorial Award honors a former or current Fellow of the National Leadership Program who demonstrates a solid commitment to advancing the disability community in policy, entertainment, or philanthropy. The 2023 Spangenberg-Chappell Memorial Award will celebrate former Fellow, Elizabeth Kim. Kim will receive $1,000 and be honored on stage at RespectAbility’s 10th Anniversary Celebration, featuring Platinum Sponsor Wells Fargo, in Los Angeles on November 2. [continue reading…]

Los Angeles, Oct 17 – Director Derek Dabkoski’s masterly made documentary, Derek Changes His Mind, is a stunning and emotional piece. It follows the story of Dabkoski himself, who acquired a traumatic brain injury, leaving the right half of his body disabled, and his family’s struggle to gain citizenship and afford medical treatments for his disability to have better lives for themselves and their daughter.

In the documentary, Dabkoski talks about his life after acquiring his traumatic brain injury, including researching many kinds of medical treatments and studies to receive stem cells. This treatment would help restore some functionality to his right hand and leg to improve not only his life, but also help him support his wife and their young daughter. The course of the documentary displays many of the challenges that Derek and his family have had to face, from financial difficulties and immigration status to lack of access to medical treatments and studies needed for Derek’s disability. [continue reading…]

Since 1971, the Judge Rotenberg Center in Canton, Massachusetts has served as an institution for individuals with developmental disabilities. To help patents stop dangerous behaviors, the center uses aversive therapy, in which a patient experiences a form of discomfort given by a therapist if the patient engages in perceived inappropriate behaviors. The goal is for the patient to recognize that continued occurrences of such behaviors will result in further exposure to the discomfort given by the therapist, leading them to stop the behavior.

But the Judge Rotenberg center is the only one in the country that performs aversive therapy using a device known as the Graduated Electronic Decelerator (GED). The device is usually worn by a patient on their bodies and, if the patient is exhibiting behaviors the staff deems inappropriate, an electric shock is administered from the device to the patient via a remote control.

The center states the device is only used as a last resort if a patient continues to engage in “self-injurious or violent behavior” after prior attempts at prevention have failed. But several incidents at the center have come to light demonstrating that usage of the device is ineffective at reducing harmful behaviors, left lasting physical and psychological scars on patients, and has often been used as an initial form of treatment. [continue reading…]

It is still very fresh news for all of us at RespectAbility that my friend and colleague Ben Spangenberg passed away, but amidst the grief, it is impossible not to remember Ben’s amazing contributions. Obviously, Ben was best known in our world for his leadership of our National Leadership Fellowship Program. He lived by a simple vision saying, “I want young people in the disability community to know they are loved and appreciated for their unique dreams, talents, and skills.” He always maintained that the disability community needed the opportunity to share and be recognized for our talents. He was particularly excited when the fellowship began to pay hourly wages, as he knew that it would enable many more people to participate in the program. This exemplified one of the strongest facets of Ben’s leadership, but not the only one. [continue reading…]

When I first joined RespectAbility, Ben was one of the first team members I met. He shared with me that RespectAbility was a family, not just a workplace, and it turns out, he was right. What he didn’t say back then, but I came to learn during my tenure, was that Ben was a big part of why RespectAbility is more than just a team of disabled and disability advocates working toward common goals. Ben recognized and appreciated the humanity in all of us and understood better than most that our authentic, disabled identities made us powerful human beings. These identities also make us better advocates and models for those who come after us. [continue reading…]

I initially joined RespectAbility as a Fellow in January 2018, as a part of the first Fellowship cohort that Ben was responsible for recruiting. Some of the people in that cohort remain my closest friends, and without Ben, I would have never met any of them.

Later in 2018, I joined the Staff. Ben and I worked together closely to promote the Fellowship program and supervise the Communications Fellows. I had never managed anyone before, but Ben was a great mentor to me in how to provide constructive feedback on assignments. He really cared about making sure that every single Fellow would leave the program ready for success in the workplace. I’m a better manager because of Ben. [continue reading…]