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Lead On: The Access Living Blog

Disability Rights & Empowerment

While Access Living's website can provide you with the basic descriptions of our programs and our overarching principles and direction, the Lead On Blog offers an in–depth view of the specific work of our staff. We hope that this forum can forge another connection to the disability community. Feel free to comment on the various entries or to raise questions about a disability rights related issue.

Access Living: 2016 and Beyond

A conversation with President & CEO Marca Bristo

(Photo: Marca Bristo, center, speaking at ADA25Chicago Launch Event)

My goals for Access Living in 2016 are battling for the civil rights for people with disabilities, continuing to maintain a strong organization and providing consumers and visitors with high quality services,” said Marca Bristo, President & CEO of Access Living. For the past 35 years, she has been on the frontlines of the disability rights movement. In addition to her work at Access Living, from 1994 to 2002 she chaired the National Council on Disability, an independent federal agency that makes recommendations to the President on behalf of the 54 million people in the United States with disabilities, and she helped draft and win the passage of the Americans with Disabilities Act. Recently, Marca took time to share her goals and hopes for Access Living in 2016 and beyond.

Before looking ahead, Marca reflected on accomplishments of 2015. Around the country, communities celebrated the 25th Anniversary of the Americans with Disabilities Act. Locally, ADA 25 Chicago was a significant highlight. ADA 25 Chicago commemorated the 25th Anniversary of the Americans with Disabilities Act (ADA), leveraging the milestone to improve the quality of life for people with disabilities. With the support of ADA 25 Chicago, organizations across Chicago supported events to celebrate and build upon the ADA, such as the Disability Pride Parade and the Chicago Cultural Accessibility Consortium. Also, several Legacy Projects were launched, including the Leadership Institute for People with Disabilities. The institute is designed to facilitate the full participation of people with disabilities in all facets of Chicago’s civic leadership. This Leadership Institute will be the first of its kind in the nation to create a pipeline of qualified people with disabilities and provide access to the networks that can facilitate entry to leadership positions.

Marca Bristo, at a table with two others on both sides, testifying about the Illinois State Budget

While the 25th Anniversary was a highlight, the budget crisis in Illinois posed a big challenge in 2015. As a way to cut costs, Governor Rauner wanted to change the eligibility for the home services program for people with disabilities. If the change had been approved, 10,000 people would have lost their home services and their independence. Access Living played a huge part in preventing the change in eligibility and preserving independence for 10,000 people with disabilities. Yet in 2016, the ongoing state budget crisis continues to leave non-profit organizations and people with disabilities vulnerable to cuts.

The budget impasse is a challenge, but Access Living is forging ahead with two new programming opportunities. “In 2016, we are excited because Access Living is kicking off new initiatives, including a transition program for high school students and a training institute,” said Marca. The Realizing Education and Advancement for Disabled Youth (R.E.A.D.Y.) program will provide Chicago Public high school students with disabilities with tools and support to transition to post high school life. The two track program includes transition support into post secondary education and into employment. The training institute will provide disability rights and awareness trainings for a full spectrum of communities, from non-profits to the business world.

Though she has been leading Access Living for more three decades, Marca is compelled to continue the daily fight for people with disabilities, “because the work isn’t done and because of the amazing people that work at Access Living.” According to Marca, Access Living will have to keep fighting for the rights and dignity of people with disabilities. But if anyone is prepared for that fight, it’s Access Living. “I have a highly-skilled group of staff members that work tirelessly beside me to continue the mission of Access Living,” she said.

Working together with her staff and the community, Marca explains that, “We want to continue to help people find their voice and change and reshape the way our country thinks about the disability community.”

In particular, change needs to come in the area of employment. Marca hopes that Access Living can change the face of employment for everyone. “In order to create more jobs, we need to foster the link between people who are looking for jobs and people who are hiring,” she said.

Another need is in the area of evolving technology and the “shared economy.” Marca hopes to see increased accessibility for people with disabilities with organizations like Uber and Air B&B.
Access Living continues to be at the forefront of health care advocacy. “There needs to be a continued shift toward closing institutions,” Marca said. To meet the demand of people transitioning out of institutions and into their own homes, there needs to be a shift in the housing market toward accessibility. The key is to send the message that what works for people with disabilities works for everyone. According to Marca, “If they (houses) are not accessible for people with disabilities then they aren’t accessible to anyone because we will all likely need those features someday.”

While in the short term, the demand for Access Living is greater than ever, Marca hopes that someday disability equality is the norm. “I envision a day where Access Living is not needed,” Marca said.

Ultimately, Marca knows that in 2016 Access Living will continue fighting for the independence and dignity of people with disabilities. “We want to continue empowering people and helping them to find their voice and the path to independence. We need to keep pushing for the social change that needs to occur so that they can realize those dreams.”

(Top Photo: Marca Bristo, center - speaking in the microphone, at the ADA 25 Chicago Kick Off event in 2016. Behind Marca are a number of Chicago and Illinois VIPs that supported ADA 25 Chicago)

(Photo above: Marca Bristo sitting at a rectangular table, testifying over the 2015 Illinois Budget. Total of five people at the table.)

This piece was written by Jessica Ebersole, a public relations intern at Access Living
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Black History Month and People with Disabilities

By Timotheus Gordon

A blog post about the role of black people with disabilities in history. The author is Timotheus Gordon, a disability advocate, member of Advance Youth Leadership Power, and author of @BlackAutist, a blog where posts are focused on not only #autismacceptance but also issues & news surrounding autistic #peopleofcolor.Learn More

The Illinois State of the State and Access Living

Today, Access Living will engage with the community in Springfield and Chicago for State of the State Activities Learn More
2016-January-26-Jason-Carrington

Implementation of New Rule forces Wicker Park resident to hire extra PA and threatens his stability

The implementation of new overtime rules in Illinois puts the independence at risk of people with disabilities in the Home Services ProgramLearn More
2016-January-6-Perlman-2

Don’t put us in a box

Itzhak Perlman performs and speaks at Harris Theater

“The only reason kids thought I was weird is because I practiced three hours a day.” -- Itzhak Perlman

Weird or not, the practice paid off for Itzhak Perlman, the world renowned violinist and composer who was in Chicago on January 6. The glimpse into Perlman’s childhood came on stage at Harris Theater for Music and Dance as the legendary musician spoke on stage with Access Living President & CEO Marca Bristo for an event billed as “An Intimate Conversation with Itzhak Perlman.” In front of an audience of more than 500 people, Marca interviewed Perlman for more than half an hour, asking questions about everything from accessibility in the arts and the portrayal of disability, to the United Nations Convention on the Rights of People with Disabilities and Perlman’s time at the White House as a Presidential Medal of Honor recipient. Perlman shared insights about disability and music as well as anecdotes about airline travel and the Ed Sullivan Show. Perlman, who contracted polio at a young age, never shied away from the topic of disability. Through his answers and through the stories he shared with Marca and the audience, Perlman sent the message that disability is a significant part of who he is but that it doesn’t define him.

The same held true for Perlman’s parents. Disability didn’t take center stage. According to Perlman, his parents didn’t worry about his disability, they only “worried whether or not I was practicing the violin.”

In the conversation, Perlman spoke about his travels and encounters with accessible hotel rooms. “We are not all disabled in the same way,” Perlman said. “Don’t put us in a box.” He explained that sometimes the built environment and accommodations, designed with people with disabilities in mind, don’t take into account diversity within disability.

Itzhak Perlman and Marca Bristo on stage at Harris Theater. Sign Language Interpreter on right side of image and stage


The conversation on January 6, which was followed in the evening by a performance of the Juilliard Orchestra conducted by Perlman, was a partnership between the Harris Theater and Access Living. The conversation and the concert were the final public ADA 25 Chicago sponsored events. Throughout 2015 and into 2016, more than 200 organizations hosted ADA 25 Chicago events or initiated programs intended to build a legacy of inclusion and accessibility in the spirit of the 25th Anniversary of the Americans with Disabilities Act.

The Harris Theater commitment to ADA 25 Chicago went beyond the programs with Itzhak Perlman. As part of a Capitol improvement project called the Imagine campaign, Harris Theater installed two new, high-capacity elevators in order to better accommodate disabled and non-disabled patrons. Harris unveiled the new elevators in December, just in time for the Perlman events.

Though Perlman has performed for leaders from around the world and in front of millions of people throughout his prestigious career as a musician, Perlman played the role of disability advocate in the early afternoon on January 6. On stage with Marca, Perlman spoke frankly about disability, neither hiding it or highlighting it. He sent a message that thousands within the disability community and independent living movement have tried to deliver for years. Disability is a natural part of life. No matter who we are, chances are everyone is affected in one way or another.

Here is coverage from the Chicago Sun-Times of the conversation between Perlman and Briso
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Deadline approaching for Home Services Overtime Rules

In March, the State of Illinois will begin to enforce implementation guidelines regarding new U.S. Department of Labor overtime rules. According to the rules, personal assistants who are employed through the State Home Services Program are eligible for overtime pay. Yet, implementation guidelines from the State of Illinois make it nearly impossible for personal assistants to earn overtime. In addition, the guidelines threaten the stability of consumers now in the program.

The following include a number of implementation guidelines from the Illinois:

The 35 Hour Cap: The Illinois implementation plan caps the number of hours an individual provider works for one consumer at 35. This will force consumers to have to seek additional providers by January 1, 2016.

40 Hour Cap for Individual Providers: Minus a few exceptions, Illinois will cap the total number of hours an Individual Provider may work at 40. Prior to this policy, there was no cap on overtime hours. It is estimated this will impact up to 9,000 individual providers. If individual providers are forced to scale back hours, providers will be forced to choose between customers in the Home Services Program. It will also result in the loss of hours and pay for a workforce that already earn annual wages near the federal poverty line.

Exceptions: The exceptions for approving customer overtime outlined in the policy appear narrow, arbitrary and unjustified, in possible violation of the requirements of the Americans with Disabilities Act. Literally, only people who require 24 hour monitoring will be eligible to approve overtime.

Based upon information from the State of Illinois, in the last six months of 2015 (before the rules were in effect) about 6,000 Home Services Providers (or personal assistants) worked overtime at some point. About 4,500 people with disabilities in the Home Services Program require more than 40 hours of assistance per week. Many of the people that require more than 40 hours will be forced to hire new and additional personal assistants.

Also, around 600 workers --

a) work overtime and
b) work for more than one person.

This means, the personal assistants will have to decide which hours to cut for which consumers.

Recently, media outlets began to run stories about the issue. Here is a piece from the Associated Press . Here is a story from Medill Reports . These stories look at the impact of the new rules on live-in providers, who will find their pay drastically reduced, putting their overall financial security at risk.

In a recent email blast, Access Living’s Director of Advocacy, Amber Smock, wrote this about the new implementation rules:

The Home Services Program was originally designed to provide people with disabilities with actual choice in who to hire and fire. We at Access Living are certainly in support of overtime pay for those workers who work more than 40 hours a week, but we also have to stand up for the right of HSP customers with disabilities to make their own decisions about what’s right for them. So, we will continue to monitor and to ask for greater flexibility.

If you have questions or concerns, or would like to share your story about the impact of the new rules in Illinois, please contact Access Living.


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Action Alert: No on New Home Services Program Overtime Policy

An Action Alert on the New Department of Labor Overtime and Travel time rule Learn More

Update on Illinois Home Services Program Advocacy

A message from Amber Smock, Access Living’s Director of Advocacy. The note is about a new rule from the Department of Labor, and the impact of the rule on Illinois’ Home Services Program.
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International Day of Persons with Disabilities

December 3 is recognized around the world as International Day of Persons with Disabilities Learn More
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