Monday, January 24, 2011

Ed Roberts Day-January 23rd

Ed Roberts is the father of the Independent Living Movement.

Edward Verne Roberts was born on January 23, 1939. At the height of the polio epidemic in the United States, and before Jonas Salk developed the vaccine that ended the epidemic, Ed Roberts contracted polio. He was 14 years old. The disease left him paralyzed from the neck down (except for some movement in two fingers and a couple of toes,) and compromised his ability to breathe on his own, making it necessary for him to sleep in an iron lung.

During the earliest days of his paralysis, Ed Roberts attended school via telephone hook-up. His mother, however, insisted he spend time in an actual classroom, and encouraged him to assert himself and lobby for his rights at school. With her support and encouragement, he moved away from thinking of himself as “helpless” and “crippled.” Spurred on by his mother’s positive attitude, and refusal to see his talents and intelligence go to waste, Ed Roberts seems to have been destined for a life of advocacy and social change. By the time a high school administrator threatened to deny him a HS diploma because he had not completed driver's ed and gym, Ed was more than ready to make his voice heard and fight for his rights. He successfully won the right to graduate, went on to attend the College of San Mateo and, eventually, U.C. Berkeley, where he had to fight to be taken seriously as a student with a bright future.

On learning that Roberts had a severe disability, one of the UC Berkeley deans famously commented, "We've tried cripples before and it didn't work." It would be shocking to hear such a thing, today. When Ed Roberts first arrived at Berkeley, it was all too common.

In many ways, Roberts’ fight to gain access to the same services every other student was entitled to set the scene for larger-scale civil rights actions at Berkeley. When his search for housing proved difficult due to the 800 pound iron lung that he slept in at night, the director of the campus health service offered him a room in an empty wing of the Cowell Hospital. Robert's accepted on one condition: that the area where he lived be treated as dormitory space and not a medical facility. This action changed everything for students with severe physical disabilities. Over the next few years, several others joined him at what evolved into the Cowell Residence Program.

Over time, the group at Cowell began calling themselves the "Rolling Quads,” and a full-fledged movement was under way. Among their achievements:

• The successful ousting of a rehabilitation counselor, who set out to limit both their access to housing, and their rights as adults,

• Curb cuts throughout campus, and

• The development of the Physically Disabled Student's Program (PDSP) - the first student led disability services program in the country.

It was not long before The Rolling Quads recognized that changes at Berkeley would not be enough: that people with disabilities needed to advocate for their rights throughout the wider community. It was then that the Berkeley Center for Independent Living (CIL), the first independent living service and advocacy program run by and for people with disabilities, was founded. While Ed Roberts was not the founder of CIL, or even the first Executive Director, he did eventually become the organization’s leader. It was under his leadership that the IL movement really took off and spread nationwide.

In 1976, Governor Jerry Brown appointed Ed Roberts Director of the California Department of Vocational Rehabilitation - the same agency that had once labelled him too severely disabled to work. In1983, he returned to the city of Berkeley where he co-founded the World Institute on Disability with Judy Heumann and Joan Leon.

Ed Roberts died in 1995. We remember him on January 23 – his birthday – as we remember other people who have made a real difference in the world.

Wednesday, April 28, 2010

Nursing Home vs. Community Based Care

Results of a new Harris Poll shows that 89% of all Americans, and 94% of retirees support legislation like the Community Choice Act which would provide home and community-based supports and services instead of older and disabled Americans being forces by the current Medicaid law into nursing homes. Medicaid is the nation's major sources of financing for long term care services, covering services for both elderly and non-elderly persons in institutional settings. (Medicaid was established at the same time as Title IX of the 1965 Amendment to the Social Security Act while Medicare was established at the same time as Title VIII of the Act.) States have authority to establish eligibility standards, determine what benefits and services to cover, and set up payment rates. All states, however, must cover nursing home services while home and community services are optional.

The Harris Poll showed overwhelming support for the Community Choice Act, across age groups and all regions of the country, with that support increasing to a high of 94% in the baby-boomer/retiree age group.

Even more striking was the fact that supporters said "yes, I would pay an extra $6 a year in taxes to fund this community-based option."

The $6 figure was calculated via 3 different methodologies, by the Coalition for Community Integration and two universities, using IRS numbers, and the result was the same each time. In addition, the $6 represents the cost to middle-class tax-payers in the "worst-case" scenario.

Friday, April 2, 2010

Current Census Data

A little over half (54%) of the nation has returned their census form. The state of Alabama is currently at 50%. Here is a breakdown of the 5 county area IL Resources serves:

Jefferson: 47%
Walker: 50%
Shelby: 51%
Blount: 53%
St. Clair: 50%

The national goal is to "beat" the 2000 Census rate of 72%.

Please complete your census form and send it in, if you have not already done so.

Thursday, February 11, 2010

Aging out of Early and Periodic Screening Diagnosis and Treatment and Olmstead

Parents of low-income children under 21 years old with disabilities know how critical Medicaid's Early and Periodic Screening Diagnosis and Treatment (EPSDT) services are. Children under EPSDT have received home health, respiratory care, personal care attendant care, private duty nursing services, prescription drugs, PT, prosthetic devices-any "medically necessary" services the pediatrician has prescribed. Some states also have Waiver services for children under 21.

What about when the child with a disability turns 21? She/he becomes an adult. Given our plendid health care system, watch out!

Many of the Medicaid services which a State must provide to children under 21 are considered "optional" for persons over 21. Institutional services - nursing homes and intermediate care facilities - are "mandatory" under Medicaid for persons over 21. These classifications are what Congress has decided. Whether the over 21 adult receives the "optional" Medicaid services by and large depends on the State in which they live.

Remember that the U.S. Supreme Court in the Olmstead decision in 1999 held that unnecessary institutionalization was discrimination under the ADA. So let's imagine, one day before the 21st birthday, the young adult receives a whole range of needed services to keep him or her out of the institution, but the day after the birthday these optional services end.

If you planned well ahead, the person has applied for Waiver services for people 21 and over. But what if there are no Waiver services available because of the dreaded "waiting list"? What if without those services the person is at risk of institutionalization?

Under Olmstead, each State is supposed to "plan" to avoid unnecessary institutionalization. We assume that CMS has explained to States that planning includes knowing chich child under 21 will be at risk of institutionalization when the optional Medicaid services end and there is no Waiver slot available. That's not asking for too much, is it?

Parents should make sure the State Medicaid office knows:
1. the birth date of your child;
2. the anticipated services needed to keep the child at home after the 21st birthday; and
3. that an application for Waiver services has been made well in advance of the 21st birthday, just to make sure the State gets the message.

Then make sure the State Medicaid office has "planned" for a Waiver slot for your child with funded services. Do not let them tell you there may be or will be a "wait list." A "wait list" is NOT A PLAN! If your state hides behind the "wait list," tell them to apply to CMS for an amendment to the Waiver in order to increase the number of people - including your child - who do not want to be placed in an institution.

Also, remember that Congress changed the Medicaid law to allow states to target home and community-based services as a state plan option for persons becoming 21, in the Deficit Reduction Act of 2005. This eliminates the need for state to obtain a waiver to proved these services for children aging out of EPSDT. Do not let your state hide behind the excuse that there is a "wait list" for waiver services. Does your state use the DRA to provide long-tern care in-home services specifically for the targeted population of people aging out of EPSDT? Why not? If your State does not, make sure none of the new people that are 21 has to enter an institution, a blatant violation of Olmstead.

There should be a written narrative specifically for the under 21 young adult by the case manager listing what services will be needed to keep the soon to be 21 year old person with a disability at home. If those services are not or will not be available on the day your child turns 21, there should be in writing a plan to obtain the services immediately. There should be a written transition plan from EPSDT to receiving appropriate Waiver services so that the 21 year old will continue "in the most integrated setting." CMS thinks these things are what States should do!

One would hope/assume/want to believe that CMS has instructed States to plan for people transitioning out of EPSDT to avoid the risk of institutionalization. One would also hope/assume/want to believe that each State would and could do such a plan.

Let's remember the ADA requires reasonable modifications of policies and programs and the Olmstead decision is now more that 10 years old! Keeping 21 year old young adults out of nursing homes does not require much planning. Just make your state do it!

Friday, January 29, 2010

Seclusion and Restraint: Concerns and Solutions Teleconference

February 8, 2010: Seclusion and Restraint: Concerns and Solutions. Teleconference discussion from 12:00 to 12:45 PM (ET) Presented by: Lise Fox (Florida Center for Inclusive Communities), Sylvia Smith (Advocacy Center for Persons with Disabilities), Margaret Hooper (FloridaDevelopmental Disabilities Council), and F. Daniel Armstrong (Mailman Center for Child Development).


Description: Families, educators, advocates and students are becoming increasingly concerned about the use of seclusion and restraint in school settings. In Florida, there are documented cases where seclusion and restraint has been used with disastrous and tragic consequences. This panel will discuss the concerns related to the use of seclusion and restraint; provide information on its use within Florida Schools, and present current efforts for ensuring how schools can provide effective and safe behavior intervention procedures including proposed state legislation, resources and training opportunities.

This web and teleconference event includes a recorded on-line presentation and a live teleconference discussion during which participants will have the opportunity to ask presenters questions about the topic. Space is limited and registrations will no longer be accepted once capacity is reached. Please note that the presentation, a recording of the teleconference, and all supporting materials will be available to the public on , , and within two weeks of the event.

Tuesday, January 26, 2010

Join Thousands of Advocates Demanding Action!

Call your Senators and Representatives toll-free:
1-800-828-0498 (thanks to Families USA!).

Tuesday, January 26, has been selected as a National Call-In Day for people with disabilities and older adults to contact their Members of Congress and tell them that healthcare reform should be passed as soon as possible. Members of Congress need to hear from you now about the need to pass real healthcare reform that includes the CLASS Act and Community First Choice Option.

Use the toll-free number above or call the Capitol switchboard at (202-224-3121) to reach the Washington office of your Representative and two Senators. NCIL also recommends that you call their local district offices. Find your Senators and Representative. Every Representative and Senator, of both parties, must hear this message:

“The time is NOW for Congress to pass meaningful healthcare reform that includes the CLASS Act and improvements in Medicaid home and community based services. All Americans deserve meaningful reforms in healthcare and long-term care that are within reach.”

Healthcare reform has taken a dramatic turn over the course of the last week. This is a chance for the grassroots disability community to flex some muscle and tell Congress that reform is still possible and must be achieved. Be a part of the wave that brings reform back and moves Congress to get this done!

Wednesday, January 13, 2010

Action Alert- Paratransit routes will be cut at the end of January without additional funding

ClasTran provides over 110,000 trips each year - 55,000 trips for seniors to area nutrition centers, 1,700 life saving trips to dialysis centers and 3, 500 trips to work and school.
Your letters, calls and emails are urgently needed, today. Ask commissioners to identify new funding to continue this service.
Jefferson County Commission
Jefferson County Courthouse
716 Richard Arrington Jr Blvd North
Birmingham, AL 35203

Jim Carns (District 5) 325-5503
Shelia Smoot (District 2) 325-5074

Affected riders are encouraged to submit letters, faxes and e-mail to the Birmingham News. Letters should be about 200 words and must include the writer's name, address and daytime telephone number. (The address and phone number will not be published.) Letters may be edited for grammar, spelling and brevity. For questions about submitting a “Letter to the Editor”, call Marvera Goymer at (205) 325-3252 or e-mail her at

For other questions or if you need more information call Judy Roy at 251-2223 ext. 102.

This flyer was developed and disseminated by grassroots transportation advocates.

Please share this alert with your network.