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.

Registration for the 2019 “Lead On!” Gala

Reserve your tickets now

2019 Lead On Gala

Join us Monday, June 10, 2019
Aon Grand Ballroom at Navy Pier
840 E. Grand Avenue, Chicago, IL 60611

5:30 p.m. Reception
6:30 p.m. Dinner, Awards Program, and Live Auction
Business Attire

The “Lead On!” Award – named for Justin Dart, Jr., the grandfather of the ADA, recognizes visionaries, individuals or institutions, who have reframed the understanding of people with disabilities and who have created positive changes in our communities. This year we are celebrating the work and impact of two leaders: Ken Roth, Executive Director of Human Rights Watch and Darren Walker, President of the Ford Foundation.

Ken Roth leads the high impact work of Human Rights Watch which brings attention globally to human right violations against people with disabilities, resulting in significant policy reform in many countries. Darren Walker is a philanthropic visionary who has built a framework of disability inclusion at the Ford Foundation and, as importantly, is educating other foundations on the role they can play in advancing disability justice.


Unable to attend but want to make a donation to the event? You can do so by clicking the button below.

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Title Date
2016-March-22-Marca-ADA25-2

Access Living: 2016 and Beyond

A conversation with President & CEO Marca Bristo

A conversation with Access Living President & CEO Marca Bristo about goals and challenges in 2016 and the years ahead Learn More

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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