text of speech against Managed Care on August 12.

On August 12, scores of people with disabilities who are against a new program, that will force 40,000 people with disabilities into managed care, rallied in downtown Chicago. During the program in Daley Plaza, Tom Wilson of Access Living delivered a speech against managed care and the new program. Here is the text of that speech —

Colleagues,

Thank you for coming. My speech today is to explain why we are here today. We are here in the streets to show opposition to the pending cuts to health care for people with disabilities in six counties in Illinois through the introduction of a Medicaid Managed Care Pilot.

The state has proposed an HMO style Medicaid Managed Care system that would place 40,000 people with disabilities into one of the 2 HMO programs administered by the 2 insurance companies selected by the state.
This will be a capitated program where the state will give the insurance companies 1,039 dollars for each consumer they have enrolled in the program every month whether the consumer uses any health care services or not.

We have many concerns about Medicaid Managed Care:
There has been a lack of input by people with disabilities and their advocates. State planning began in the summer of 2009 but it was December of 2009 before we learned that this was going on. Stakeholders meetings have been held but we have not seen any substantial changes made in the Request for Proposal or in state objectives resulting from the many criticisms and challenges.

Accountability is a concern. We know that the state is not responsive to all the problems we have identified with Medicaid but individual advocacy has been able to be successful because the state is sensitive to political pressure. We view insurance companies as more impervious to pressure. They have a dominant imperative which is to make money for the share holders.

We fear that people who have established good relationships with their doctors will be forced to change to a different primary care physician. We know numerous people with disabilities who have invested considerable time and energy into finding a doctor who understands them as a person and who understands their disability. This is a very important relationship for them. They do not want to change doctors. The ability to freely choose your specialists is doubly important to some people with disabilities. Some people with disabilities use a specialist as their primary physician. They may have a condition so rare that few specialists have had real life experience monitoring and treating it. Managed care has been known to make it more difficult or even impossible to see the specialist you need to see.

Managed Care has a history of limiting access to Physical Therapy, Occupational Therapy and other therapies that help people to maintain functional levels or help to train individuals with disabilities to deal with the physical and social barriers that exist all around them. People with disabilities require easy access to these supports by health professionals.

Durable Medical Equipment is expensive. One way Health Maintenance Organizations (HMOs) make money is by denying access to costly durable medical equipment. Sometimes they have tried to substitute cheaper and less adequate devices for the equipment that best serves the person. People with disabilities quality of life can be greatly impacted by the lack of timely access to high quality durable medical equipment.

It is not clear to me that the appeals procedures will be timely enough in response to emergency situations. Currently you can change doctors or hospitals if the doctor you have chosen is denying necessary medical treatments. This is an important protection for patients.
Accessibility has been a large problem for people with disabilities in medical settings. Few doctors and hospitals have complied with the Americans with Disabilities Act guidelines to provide accessible examination tables, diagnostic equipment and treatment facilities.

Programmatic access, such as access to TTYs and sign language interpreters at medical settings continues to be a big problem. Will these HMOs be compelled to identify ADA compliant facilities? Will the HMOs be ADA compliant themselves? Will there be enough accessible providers within a reasonable distance of each consumer?
We have grave concerns that the Medicaid Managed Care will mess with consumer controlled long term care. The Home Services Program that is available to Department of Rehabilitation consumers is known to deliver a high level of satisfaction in a very cost effective way. Consumers can hire, fire and manage their personal assistants and decide when they want the services. This means that almost every dollar the state spends goes to the home care worker because the consumer is doing the management function. When a third party like an HMO is injected into this situation, 2 things happen. The consumer loses control over their services and the consumer loses service hours as the money is now siphoned away from care to pay for unwanted management and coordination functions provided by the HMOs. Both things are bad for the consumer.

Why is the state doing this now? It is to save money, of course. The state is in a huge financial crisis and with this pilot their announced goal is to save 200 million dollars. That breaks down to $1000 per person per year in reduced health care spending. That is money that would otherwise go to health care. On top of those cuts, the 12% of the monthly capitation rate that is paid to the HMO for management, case coordination, processing paperwork and profit will come out of money currently being spent on health care. These are serious cuts in financial resources going to health care. HMOs don’t provide any health care. HMOs don’t bring any expertise in disability. HMOs bring in an expertise on denial of care and in making money.

It is important to look at the health care in a national context as well to understand what is going on. The new health reform law will add millions of people to the Medicaid rolls. The insurance companies see dollar signs. They all want a piece of this new action.

In order to gain or keep managed care contracts, how much money will we see these HMOs contributing to our politicians? Will the HMO donations get the politicians to serve their interests? Who will protect the consumer interest? It already seems that our state is listening to the corporations more than the citizens.

We say:

Let us choose our own doctors! Don’t put an insurance company between us and our doctors! Don’t put an HMO into our Home Services!

Tom Wilson

Rally to oppose managed care pilot in Illinois

Disability advocates unite to oppose Medicaid Managed Care program and preserve consumer control

Richard Jesonowski speaking at the managed care rally

“I was shocked to learn that I would be forced into managed care,” said Richard Jesonowski, an advocate with Will-Grundy Center for Independent Living who is one of thousands of people with disabilities who will soon be placed into a new Illinois Medicaid Managed Care Pilot Program.  “I am angry and concerned about what this will mean for myself and others who need specialists or specialized treatments.”

Thursday morning, Jesonowski joined scores of disability advocates who demonstrated against the new Medicaid Managed Care Pilot Program that is scheduled to begin later this year.  Organized by the Community for All Coalition, a network of Illinois disability rights organizations, the demonstration began at Daley Plaza, marched to two insurance companies that submitted managed care bids, then concluded at the State of Illinois Building.

Since the pilot program was announced, the disability community has been organizing to ensure that any new program impacting health care is in the best interest of people with disabilities and produces the best possible outcomes.   The current Medicaid Managed Care Pilot does not do so.  Instead, it threatens to limit access to specialists, limit access to durable medical equipment (such as power wheelchairs), and eliminate choices for people with disabilities. 

Covering up to 40,000 people in a six county area, the pilot program includes people with a wide range of disabilities, with diverse needs and diagnoses that may require access to specialists.  If successful, Illinois will extend the program to cover the rest of Illinois.  According to Jennifer Thomas of Access Living, a member of the coalition, “Managed care limits access to specialists because of restricted provider networks and because control is taken from the consumer and put into the hands of the HMO, who serves as a gate keeper.”  Many people with disabilities have spent a lifetime developing relationships with providers who understand their health concerns.  Managed care threatens those relationships and may put people with disabilities under the care of physicians who have limited experience with specific disabilities.   

The pilot program emphasizes savings, but Illinois has also failed to make a case for cost savings. Monetary success of managed care is based upon an assumption that care coordination will result in fewer visits to the doctor or the hospital.  But for people with certain types of disabilities, increased coordination will not decrease the frequency of health care visits.  In addition, under the current Medicaid system, Illinois pays no bills if a person doesn’t visit the doctor all year.  With managed care, the state will pay providers whether or not any services are rendered. 

In terms of cost saving, there is no more cost effective model than consumer control – a system in which the person chooses his or her own service provider.  Disability advocates insist that any new program include consumer control.  With consumer control, there is a minimum of overhead, there is no middle person, and the money spent goes directly to provide care.  “Nothing about us without us,” said Naketta Kirkland, an advocate with Progress Center for Independent Living who is now covered under Medicaid. “Managed care puts a level of red tape between the consumer and the service providers and takes control out of my hands.  Without the input and support of people with disabilities, there is no way the current pilot program will result in positive health outcomes.” 

Later in August, Illinois is expected to award two managed care contracts.  Five companies applied for the contracts.   Of the five companies, just one has responded to a request to meet with the Community for All Coalition.  As part of the demonstration, disability advocates marched from Daley Plaza to Harmony Insurance at 200 West Adams and to Centene Insurance at 233 South Wacker.   Both companies applied for managed care contracts. 

“If the program is going to work, it is critical that it include input from people with disabilities,” said Barb Pritchard of the Campaign for Real Choice in Illinois, a coalition member.  “So far, that has not happened.” 

The demonstration concluded at the State of Illinois Building, where State Representative Mary Flowers (D-31) and State Representative Lisa Dugan (D-79) spoke.  Both Representatives echoed the community’s message, supporting the demand of people with disabilities to retain consumer control. 

Prior to implementation of the pilot program, the Community for All Coalition will continue to demand changes, including a provision that enables individuals to opt out of the program. 

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The Community for All Coalition includes:  Access Living, the Campaign for Real Choice in Illinois, ADAPT, Equip for Equality, Progress Center for Independent Living, Springfield Area Disability Activists, and Will-Grundy Center for Independent Living

 

Remarks from Marca Bristo at the White House Celebration commemorating the 20th Anniversary of the ADA

White House 20^th Anniversary

ADA Anniversary Celebration

July 26, 2010

 

Remarks by Marca Bristo, President and CEO, Access Living

President, United State International Council on Disabilities

Former Chairperson, National Council on Disability   

Mr. President, Members of Congress; friends and colleagues this is a great day!

Let’s hear it – Happy Birthday ADA!

More than 20 years ago the then little known National Council on Disability — led by Sandra Parrino, Justin Dart, and Lex Frieden — launched the most comprehensive civil rights law since the Civil Rights Act of 1964.  At first it was met with hesitancy but then a rag-tag army of people who couldn’t hear, couldn’t walk, couldn’t talk, couldn’t see and couldn’t speak did what everybody said couldn’t be done. We re-educated Congress and together we passed the ADA. In  my good friend, former Congressman Tony Coelho’s words, we did this by sharing the “scar tissue” of our lives. We sent policymakers thousands of discrimination diaries – snap shots of what it was like to be a disabled person in 1989! Our rally cry was just two simple words: “Simple Justice.”  The legislative process wasn’t simple, but we forged that bipartisan alliance and made history.

I want to say thank you to our leaders.  To my heroes, all of you, people like Pat Wright, the general, Liz Savage, Judy Heuman, Ralph Neas,  Dick and Ginny Thornburg ,Bobbie Silverstein, Paul Marchard, Bob Burgdorf, Carolyn Osolinik, Michael Winter, Yoshiko Dart, John Kemp, Chai Feldblun and so many others.  And to our congressional partners who reached across the aisle — joined in common purpose — through the universality of the disability experience. Thank you so much….. Senators  Harkin, Dole, Weicker, Hatch,  Durbin, and the late Senators Kennedy and Simon and to our friends in the other house, Congressman Coehlo, Owens, Hoyer, Bartlett, Fish, and so many others. We could not have done this without all of your tireless effort.

But today we are here not only to celebrate the law and the incredible transformation of society it has set in motion. We are really here to celebrate the incredible power of the disabilities rights movement and our allies – all of you!

The changes that this law called for – lifts on buses, accessible facilities, streets and public services, accessible ATMs, telecommunications and access to workplace and many others– could not and would not have happened without us. Civil rights laws do not self-enforce. They only come to life when enlightened citizens — people who say no to the outdated policies of segregation, dependence and paternalism — seize their rights and push the envelope of reform..

Today I am reminded of those heroes of our movement who are no longer with us: Justin Dart, Ed Roberts, Frank Bowe, Elizabeth Boggs, Wade Blank, Sharon Mistler, Evan Kemp, Judi Chamberlain, Paul Hearne, Howie the Harp and so many others. And I look out in the crowd and see the next generation of leaders like Erin Mallicoat, Maryiam Cementwala  and Ari Ne’eman . And then I think of those people still locked up in institutions, people like, my fellow Illinoisans, Stanley Ligas, Ethel Williams, and Lenil Colbert. It is for all of them that we must redouble our efforts. We will not stop fighting the systemic and illegal institutionalization of people with disabilities who are today are languishing in nursing homes and other institutions. 

And I want to say a special thank you, Mr. President, to you, your administration and Attorney General Holder in particular for making Olmstead enforcement a priority of your administration.

As we look forward to the next 20 years, I know we will prevail, we will prevail  because our cause is just and right.  We will prevail because I believe in all of you! 

President Obama, members of Congress, we ask you to join us in the unfinished business of the ADA, the IDEA, the FHAA, importantly now in ratifying the CRPD, the first human rights treaty of the 21^st century.

In the words of our trusted and beloved leader, Justin Dart Jr., when he led us in this great cause for justice and equality –  ADA, America wins. I have a button from the actual signing ceremony that Yoshika has given me to give to the President – and I want you to help me close our ceremony in words that I know you all know, Justin’s words,

 “Colleagues together we have overcome. Together we shall overcome.  Lead on!”