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!

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).

Register:

http://www.surveymonkey.com/s/SeclusionWebinar

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 www.flcic.org ,www.advocacycenter.org , and www.fddc.org within two weeks of the event.

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!

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

Bettye Fine Collins - President (District 4) collinsbfine@jccal.org 325-5070

William A. Bell, Sr. (District 1) bellwa@jccal.org 325-5504

Jim Carns (District 5) carnsj@jccal.org 325-5503

Bobby Humphryes (District 3) humphryesb@jccal.org 325-5555

Shelia Smoot (District 2) smoots@jccal.org 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 epage@bhamnews.com.

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.

Rules on Travel with Emotional Support Animals are Discriminatory

On May 13, 2009, the Department of Transportation's (DOT) Air Carrier Access Act revised regulations went into effect. These rules for the first time applied U.S. nondiscrimination provisions on foreign air carriers with flights the originate in the U.S.

However, another provision of the regulations requires a uniquely high level of documentation from individuals who seek to board aircraft with psychiatric service animals or emotional support dogs.

These rules demand written documentation, such as a note from a mental health professional testifying to the need for the animal to accompany the passenger, 48 hours in advance for both psychiatric service animals and emotional support animals to be allowed on an aircraft. This is not required for service animals of people with disabilities that are not psychiatric in nature.

Seeing the regulations as discriminatory to people with mental illnesses, the Psychiatric Service Dog Society attempted to stop the rule a few months before it went into effect, but was not successful.

However, on September 18, 2009, the Department issued a new request for comments, based on the Psychiatric Service Dog Society's letters urging repeal on the rules.

DOT is seeking comments from the public on whether it should begin a new rulemaking on this practice. They are particularly seeking comments from the public on how the rule, which has been in effect since May 13, 2009, is working or not working.

The deadline for comments is December 17, 2009.

The make your voice heard, visit DOT's special input page to view and comment on the rules:

http://www.regulations.gov/search/Regs/home.html#documentDetail?R=0900006480a2662c

President signs hate crimes bill into law

President Barack Obama signed an expanded hate crimes bill into law Wednesday making it a federal offense to commit a crime against a person based on their disability. The law entitled the Matthew Shepard-James Byrd Hate Crimes Prevention Act, expands current hate crimes law to include violence based on gender, sexual orientation, gender identity and disability. The law is named after two murder victims from 1998 who were targeted for attack because of bigotry. Federal law already includes protections for crimes committed based on race, color, religion or national origin.

President Obama Stated, “No one in America should ever be afraid to walk down the street holding the hands of the person they love. No one in America should be forced to look over their shoulder because of who they are or because they live with a disability. At root, this isn't just about our laws; this is about who we are as a people. This is about whether we value one another -- whether we embrace our differences, rather than allowing them to become a source of animus.”

Quoting President Johnson from when he signed civil rights legislation into law in 1968, Obama said that "the bells of freedom ring out a little louder," when he signed the Act into law.

“You understood that we must stand against crimes that are meant not only to break bones, but to break spirits -- not only to inflict harm, but to instill fear,” Mr. Obama said, “You understand that the rights afforded every citizen under our Constitution mean nothing if we do not protect those rights -- both from unjust laws and violent acts. And you understand how necessary this law continues to be. “

People with disabilities are 50 percent more likely to experience nonfatal violent crime than those without disabilities, according to a Justice Department study released in early October. The study found that about one in five crime victims with disabilities believe their disability was the reason they were targeted.

You Tube Video on Healthcare

Heather Graham stars as the Public Option in this funny ad, showing how she'll force the lazy, bloated private insurance companies to get back in the game and compete.

After all, competition is as American as apple pie.

Featuring actor Peter Coyote as the narrator

Go here to view the video.