Tuesday, January 31, 2012

2010 Revised ADA Requirements: Accessible Pools - Means of Entry and Exit | Jan 2012

U.S. Department of Justice
Civil Rights Division
Disability Rights Section




Accessible Pools Means of Entry and Exit




The Department of Justice published revised final regulations implementing the Americans with Disabilities Act (ADA) for title II (State and local government services) and title III (public accommodations and commercial facilities) on September 15, 2010, in the Federal Register. These requirements, or rules, clarify and refine issues that have arisen over the past 20 years and contain new, and updated, requirements, including the 2010 Standards for Accessible Design ("2010 Standards").

Overview

Providing equal opportunity to people with disabilities is the fundamental principle of the Americans with Disabilities Act. This publication is designed to help title II and title III entities understand how new requirements for swimming pools, especially existing pools, apply to them.

People with disabilities were, for too long, excluded from participating in many recreational activities, including swimming. The revised 2010 Standards change that. For the first time, the 2010 Standards set minimum requirements for making swimming pools, wading pools, and spas (pools) accessible. Newly constructed and altered pools must meet these requirements. Public entities and public accommodations also have obligations with respect to existing pools. State and local governments must make recreational programs and services, including swimming pool programs, accessible to people with disabilities. Public accommodations must bring existing pools into compliance with the 2010 Standards to the extent that it is readily achievable to do so.

The requirements for newly constructed and existing pools will ensure that, going forward, people with disabilities can enjoy the same activities—a community swim meet; private swim lessons; a hotel pool—at the same locations and with the same independence, ease, and convenience as everyone else.

The 2010 Standards establish two categories of pools: large pools with more than 300 linear feet of pool wall and smaller pools with less than 300 linear feet of wall. Large pools must have two accessible means of entry, with at least one being a pool lift or sloped entry; smaller pools are only required to have one accessible means of entry, provided that it is either a pool lift or a sloped entry.

There are a limited number of exceptions to the requirements. One applies to multiple spas provided in a cluster. A second applies to wave pools, lazy rivers, sand bottom pools, and other pools that have only one point of entry. For more information on the specific requirements and exceptions, see sections 242 and 1009 of the 2010 Standards.

Existing Pools

Title II Program Accessibility

Individuals with disabilities cannot be excluded from or denied participation in State and local government programs, services, or activities because a facility is inaccessible or unusable. This means that all programs, services, and activities, when viewed in their entirety, must be accessible to individuals with disabilities unless doing so results in a fundamental alteration in the nature of the program or in an undue financial and administrative burden. This requirement is known as "program accessibility."

Program accessibility applies to all pool-related programs, services, and activities (swimming programs). Program accessibility does not typically require that every pool be made accessible. However, if a public entity has only one existing pool, it must take steps to ensure that its swimming program at that pool is accessible.

A public entity determines which method it will use for meeting its program accessibility obligations. When structural changes are made to existing pools, including installation of a fixed pool lift, the changes must comply with the 2010 Standards. If a public entity chooses to acquire equipment (e.g., a portable lift) to provide program accessibility, the entity should select equipment that includes features required by the 2010 Standards, including independent operation by individuals with disabilities. Sharing accessible equipment between pools is not permitted, unless it would result in undue burdens to provide equipment at each one. Accessible pool features must be available whenever the facility is open to the public. When choosing to purchase equipment or to make structural changes, the public entity should factor in staff and financial resources required to maintain program accessibility.
Over time, a public entity will need to reassess its compliance with program accessibility, and it may become necessary to acquire new accessible equipment or make structural modifications. For more information about program accessibility, see the title II regulations at Section 35.150.

To determine which pools must be made accessible, public entities should consider the following factors:

# How to provide swimming programs in the most integrated setting appropriate;

# The ways in which people participate in the programs (e.g., individually, in families, in youth groups);

# Locations where the programs are offered;

# What programs are offered at each pool and to which constituencies (e.g., family swims, children's swimming lessons, older adult exercise classes, high school swim meets);

# Which pools are accessible and to what extent; and

# Level of dispersion of the accessible locations and convenience to reach them (e.g., one pool in each quadrant of the town, all on accessible mass transit).

Title III Readily Achievable Barrier Removal

Title III of the ADA requires that places of public accommodation (e.g., hotels, resorts, swim clubs, and sites of events open to the public) remove physical barriers in existing pools to the extent that it is readily achievable to do so (i.e., easily accomplishable and able to be carried out without much difficulty or expense).

Determining what is readily achievable will vary from business to business and sometimes from one year to the next. Changing economic conditions can be taken into consideration in determining what is readily achievable.

For an existing pool, removing barriers may involve installation of a fixed pool lift with independent operation by the user or other accessible means of entry that complies with the 2010 Standards to the extent that it is readily achievable to do so. If installation of a fixed lift is not readily achievable, the public accommodation may then consider alternatives such as use of a portable pool lift that complies with the 2010 Standards. It is important to note that the barrier removal obligation is a continuing one, and it is expected that a business will take steps to improve accessibility over time. When selecting equipment, the public accommodation should factor in the staff and financial resources needed to keep the pool equipment available and in working condition at poolside. For more information about barrier removal, see the title III regulations at Section 36.304.

To determine which pools must be made accessible, public accommodations should consider the following factors:

# The nature and cost of the action;

# Overall resources of the site or sites involved;

# The geographic separateness and relationship of the site(s) to any parent corporation or entity;

# The overall resources of any parent corporation or entity, if applicable; and

# The type of operation or operations of any parent corporation or entity, if applicable.

New Construction and Alterations

New Construction

The 2010 Standards, which set requirements for fixed elements and spaces, require that all new pool facilities built by State and local governments, public accommodations, and commercial facilities must be accessible to and usable by persons with disabilities

Alterations

A physical change to a swimming pool which affects or could affect the usability of the pool is considered to be an alteration. When pools are altered, the alterations must comply with the 2010 Standards, to the maximum extent feasible. Changes to the mechanical and electrical systems, such as filtration and chlorination systems, are not alterations. Entities must ensure that an alteration does not decrease accessibility below the requirements for new construction. For example, if a hotel installs a fixed pool lift powered by water pressure, it must ensure that the hose connecting to the lift does not create a barrier across the accessible route to the pool.

Compliance Dates

On or after March 15, 2012

All newly constructed or altered facilities of public entities and public accommodations, including pools, must comply with the 2010 Standards.

On or after March 15, 2012

All existing facilities of public entities and public accommodations, including pools, must comply with the 2010 Standards to the extent required under title II program accessibility or title III readily achievable barrier removal requirements.

For more information on effective dates, see the Department's publication called ADA 2010 Revised Requirements: Effective Date and Compliance Date and the 2010 Standards for Accessible Design.

Maintenance of Accessible Features

Accessible pool features must be maintained in operable, working condition so that persons with disabilities have access to the pool whenever the pool is open to others. For example, a portable pool lift may be stored when the pool is closed but it must be at poolside and fully operational during all open pool hours.

An entity should recognize that certain types of equipment may require more staff support and maintenance than others (e.g. ensuring there are enough batteries for a pool lift to maintain a continued charge during pool hours). Entities should plan for these issues and modify operational policies as needed to provide accessible means of entry while the pool is open.

Staff Training

Ongoing staff training is essential to ensure that accessible equipment (particularly pool lifts) and pool facilities are available whenever a pool is open. Staff training should include instruction on what accessible features are available, how to operate and maintain them, and any necessary safety considerations.

Tax Credits and Deductions

Title III entities may be able to take advantage of federal tax credits for small businesses (Internal Revenue Code section 44) or deductions (Internal Revenue Code section 190) for barrier removal costs or alterations to improve accessibility regardless of the size of the business. See the IRS website www.irs.gov for more information.

For more information
about the ADA,
please visit our website
or call our toll-free number.
ADA Website: www.ADA.gov

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January 2012


# http://www.ada.gov/pools_2010.htm

Disability-parking abuse crackdown targets meter cheaters in Chicago's Loop

By CHRIS FUSCO | Chicago Sun Times  | Jan 31, 2012

Police on Tuesday launched an unprecedented sweep across the Loop to catch disabled-parking abusers and found that one of every five drivers was breaking the law.

The 21 officers checked 54 motorists with disability tags who parked for free in metered spots and wound up ticketing ten of them.

{photo: Jesse White, Illinois Secretary of State and Lt. David Blanco, Police Commander, Traffic Division, announced results of a sting operation targeting motorist at Clark and Monroe St.,| John H. White~Sun-Times}

Most of those able-bodied drivers were hit with citations that carry fines ranging from $500 to $1,000 under a new city disabled-parking ordinance that took effect Sunday.

The sting — the largest of its kind in recent memory — also illustrated the manpower that’s needed to put a dent in disabled-parking cheating.

That’s sure to fuel the debate in Springfield about whether it’s time for Illinois to end free parking in metered spots for all but a handful of disabled people.

Eighteen officers from the Chicago Police Department and three from the Illinois Secretary of State’s office, most in plainclothes, took part in Tuesday morning’s crackdown.

“I’m certainly glad that the city and the Secretary of State are trying to do something; I’m just not certain that — unless we have a sting once a week — it would be effective” in the long run, said state Rep. Karen May (D-Highland Park), who is proposing the General Assembly end free parking for all but a small percentage of the 700,000 people statewide who have disability-parking placards and license plates.

Disabled-parking abuse has become a hot-button issue since a series of stories appeared in the Chicago Sun-Times in November that showed that, with Chicago’s parking-meter fees rising, more people than ever have been illegally using disabled-parking placards and license plates to cheat the system.

Even though a private company now runs the city’s meters and keeps all meter revenues, Chicago taxpayers still are left to cover the cost of people who use disabled-parking tags to park for free. So far, the city has been billed $13.5 million by Chicago Parking Meters LLC, though Mayor Rahm Emanuel has refused to pay because city officials suspect the bill was incorrectly calculated.

“The two sides are still exchanging information, and there is no further update” about that bill, Emanuel spokeswoman Kathleen Strand said in an email.

Meanwhile, the mayor is making it clear he thinks that disabled people should be able to keep parking for free in metered spots. Secretary of State Jesse White, who oversees the distribution of disability placards and plates, concurs.

“It is imperative that we protect those who legitimately require a handicap placard for parking in the city,” Emanuel said in a news release. “The abuse of disability placards is not acceptable under the law or to taxpayers who are being cheated by those who exploit the laws.

“This enforcement effort today sends a clear message that cheating and abuse of placards will not be tolerated in Chicago.”

Police questioned 54 drivers who parked in metered spots throughout the Loop between 6 a.m. and 9 a.m., with officers ticketing eight drivers who weren’t disabled but were using somebody else’s legitimate placard to park for free. Police confiscated those eight placards, too.

Two more able-bodies drivers were ticketed for illegally using a car with a legitimately disabled person’s license plate to try to park for free.

Eight of the 10 alleged violators were charged under the new city ordinance and are subject to fines ranging from $500 to $1,000 — similar to the fines that exist under current Illinois law. But, if they’re found guilty, the city will not have to share any of that revenue with the state.

The other two drivers were charged under Illinois law because their cases involved handicapped placards from Indiana and Michigan.

Stiffer penalties for disabled-parking abuse in Chicago went into effect Sunday. The stiffest penalty is for drivers caught by police using fake, stolen or expired disability-parking placards. They now face immediate impoundment of their cars and fines of between $1,500 and $3,000.

Police didn’t find any fake, stolen or expired placards Tuesday, so no cars were towed.

# http://www.suntimes.com/10344711-418/disability-parking-abuse-crackdown-targets-meter-cheaters-in-loop.html

Monday, January 30, 2012

ILLINOIS AFFORDABLE HOUSING MONTH IS MARCH 2012 | message from Housing Action Illinois

ILLINOIS AFFORDABLE HOUSING MONTH IS MARCH 2012

Affordable Housing Month is the perfect time for organizations and individuals to raise awareness about affordable housing and homelessness. It is also an opportunity to build momentum for future housing victories through organizing, advocacy and public education activities.

Ideas for Activities

* Set-up a meeting with your legislator to advocate for funding of the Emergency & Transitional Housing and Homelessness Prevention Program.
* Organize a postcard campaign to advocate for legislation that supports affordable housing.
* Press outreach, such as Letters to the Editor and editorial board meetings.
* Community Forums and Congregational Outreach.
* Film Screenings & Discussions.
* Get Local Governments to do Affordable Housing Month Proclamations.
* Legislative/Community Breakfasts.
* Tour or open house of affordable housing sites and/or areas of great housing need.

Check out Housing Action Illinois Web Site

At www.housingactionil.org/organizing you’ll find additional ideas for new events, a sample proclamation and press release, fact sheets and other information to help you make most of Affordable Housing Month.

Housing Action Illinois wants to work with you to plan Affordable Housing Month activities. Please call Gianna Baker at (312) 939-6074 X. 110 or gianna@housingactionil.org.

Imagine His Shock. His Leg Had Vanished in NYC Health Dept Photo AD | Jan 29, 2011

By PATRICK McGEEHAN | The New York Times

Having played a singing elephant on stages across the country, Cleo Berry is well acquainted with the vagaries of show business. But he still was stunned to learn that he had unwittingly become an amputee in advertisements that New York City is posting to warn of the dangers of diabetes.


Mr. Berry was a struggling young actor several years ago when he accepted $500 to pose for some photographs in a Manhattan studio, he recalled in a telephone interview from his home in Los Angeles on Saturday. He had not given those pictures much thought until Friday night, when a friend alerted him that his image — minus one leg — was all over the Internet.


An advertising agency for the city’s health department obtained the rights to use the photo to illustrate its campaign — shown throughout the subway system — against supersize portions of fast food and sugary sodas. To emphasize that consuming too much of those foods could lead to diabetes and the amputation of limbs, the agency edited away the lower half of Mr. Berry’s right leg and conjured up a pair of crutches.

“I was beyond shocked,” Mr. Berry said, recounting his reaction to seeing himself portrayed as ailing and crippled. “I cried at my computer screen for, like, a minute.”

Then, after studying the ad more closely, “I said: ‘Oh my gosh, they even gave me crutches. Come on, people.’ ”

Mr. Berry, 27, said he supported the city’s efforts to educate people about the dangers of diabetes, but he said he disagreed with the use of a manipulated image of an able-bodied person, instead of an image of a real victim of the disease.

“You are New York City, for God’s sake,” he said. “Give it to us the right way or we won’t believe you at all.”

He said he had answered an ad for the photo shoot because the $500 it promised would help pay his rent. He remembered liking the photographer, Morten Smidt, though said he did not understand that the pictures were for a stock photo agency, Image Source. But he acknowledged that he had signed a standard release allowing alteration of his image.

After the modification of the photo was exposed last week, city officials defended the practice as common in advertising.

Howard Wolfson, a deputy mayor, wrote on Twitter that his grandmother had lost a leg to diabetes. “She would not have appeared in an ad,” Mr. Wolfson wrote. “Doesn’t make her loss less real to have it depicted by another.”

John Kelly, a spokesman for the health department, said in a statement: “This issue isn’t about one actor but rather the 700,000 New Yorkers who struggle with diabetes, which kills 1,700 people a year and causes amputations in another 3,000. Advertising to warn the public about health concerns saves lives, and we will continue our efforts to warn New Yorkers about diabetes.”

Although only the bottom of his face is shown in the ads, Mr. Berry said he was immediately concerned about the effect this depiction could have on his career as an actor.

He moved to Los Angeles a few years ago and has landed some roles in movies and on television; he played a hotel concierge last season on the Fox series “House.”

Sure, he is large enough that he tends to play parts reserved for big and tall men, including Horton the elephant in a touring company of “Seussical,” the musical. But he says he is healthy and agile.

“I’ve always wanted my photo in an ad all over the city, but I was hoping it would be for a TV show or something, not — this,” Mr. Berry said.

He even offered to represent the health department’s archenemy, possibly for less than his usual rate. He said if a soda company “would like to call me so we can do a commercial, I’ll sing and dance for them and I won’t charge an arm and a leg.”

# http://www.nytimes.com/2012/01/30/nyregion/man-in-diabetes-ad-says-he-is-shocked.html?_r=1&partner=rss&emc=rss

National Council on Disability to Meet on February 1, 2012 | listen via phone

Meetings & Events Council Meetings

The Members of the National Council on Disability meet several times throughout the year to discuss agency priorities, policy trends, and other agency business. Pursuant to the Sunshine Act, meetings of official business of the National Council on Disability are open to the public, with the exception of executive sessions, which may be closed pursuant to the exemptions of the Sunshine Act. People with disabilities are always encouraged to attend Council board meetings. Those who plan to attend a meeting and require accommodations should notify NCD as soon as possible to allow time to make arrangements.

Next Meeting February 1, 2012

TIME AND DATES: The Members of the National Council on Disability (NCD) will meet by phone on Wednesday, February 1, 2012, 3:00 – 4:00 PM, ET.

PLACE: The meeting will occur by phone. NCD staff will participate in the call from the NCD office at 1331 F Street, NW, Suite 850, Washington, DC 20004. Interested parties may join the meeting in person at the NCD office or may join the phone line in a listening-only capacity using the following call-in number:
1-888-466-4440; Meeting Name: NCD Meeting. If asked, the conference call's leader's name is Aaron Bishop.

MATTERS TO BE CONSIDERED: The Council will meet by phone for deliberations regarding disability forums.

CONTACT PERSON FOR MORE INFORMATION: Anne Sommers, NCD, 1331 F Street, NW, Suite 850, Washington, DC 20004; 202-272-2004 (V), 202-272-2074 (TTY).

ACCOMMODATIONS: Those who plan to attend and require accommodations should notify NCD as soon as possible to allow time to make arrangements.

2012 Meetings

March 8 - 9, 2012
May 21 - 22, 2012
July 25 - 27, 2012

# For the National Council on Disability visit: http://www.ncd.gov/

City of Chicago Sues 15 Cab Companies for Wheelchair Compliance | Jan 29, 2012

Sun-Times Media Wire

Chicago - The city announced Saturday it has filed 15 separate lawsuits against cab owners not in compliance with current wheelchair accessibility requirements.

A city investigation found the owners were not providing the required number of wheelchair accessible cabs, according to a release from Mayor Rahm Emanuel’s office.

Recently adopted ordinances require cab owners with more than 20 medallions to have at least five percent of their fleet as functioning wheelchair accessible vehicles, the release said.

“We are committed to providing better, more accessible taxi service for disabled Chicagoans,” Emanuel said in the release. “Today’s efforts, in conjunction with the taxi reforms passed by City Council this month, mark important steps toward this goal.”

The city is seeking the revocation of the medallion licenses that were required to be wheelchair accessible vehicles, the release said. The cases are up for first status hearings March 2012 in front of the city’s Department of Administrative Hearings.

“Taxicabs are a critical transportation option for people with disabilities living in or visiting Chicago,” city Business Affairs and Consumer Protection Commissioner Rosemary Krimbel said in the release. “Today’s actions reflect our commitment to ensure that the rules we have in place to protect the rights of people with disabilities are enforced.”

The new ordinance also provides incentives for cab owners to place more wheelchair accessible vehicles into service.

Thursday, January 26, 2012

State of the Union 2012: Online Discussion - Disability Issues: Kareem Dale, Special Assistant to the President for Disability Policy | Jan 27, 2012 - 9 AM

State of the Union 2012: We Want to Hear From You

Starting immediately after the speech and continuing through the rest of the week, senior White House officials will hear from you about the state of our union. President Obama is committed to creating a system of transparency, public participation, and collaboration using social media and other online resources to engage citizens across America on your highest priorities.

Thursday’s Office Hours will feature community-focused discussions with policy advisors and experts and Friday will be directed towards specific issues.

# http://www.whitehouse.gov/blog/2012/01/20/state-union-2012-we-want-hear-you

Office Hours Schedule for Friday January 27 (times listed are EST)

•9:00 a.m. Disability Issues: Kareem Dale, Special Assistant to the President for Disability Policy

Here's how Office Hours work:

•Ask your question on Twitter with the hashtag #WHChat
•Administration officials respond to your questions in real-time via Twitter
•Follow the Q&A through the @WHLive Twitter account
•If you miss the live session, the full Q&A will be posted on WhiteHouse.gov and Storify.com/WhiteHouse


YouTube Uploaded by whitehouse on Jan 20, 2012

Senior Advisor to President Barack Obama, David Plouffe, discusses the ways the American people can engage with the White House the night of the 2012 State of the Union address as well as in the days that follow. Learn everything at http://whitehouse.gov/sotu

EEOC Receives Record Number of ADA Discrimination Charges | Jan 25, 2012

PRESS RELEASE

Private Sector Bias Charges Hit All-Time High
Pending Inventory Reduced for First Time in 10 Years, Record Amount of Relief Obtained in FY 2011, EEOC Reports

WASHINGTON—The U.S. Equal Employment Opportunity Commission (EEOC) received a record 99,947 charges of employment discrimination and obtained $455.6 million in relief through its administrative program and litigation in Fiscal Year 2011, the agency announced today. For the second year in a row, despite a record number of receipts, the Commission resolved more charges than it took in with 112,499 resolutions (7,500 more resolutions than FY 2010—an increase of 7%)—leaving 78,136 pending charges, a ten percent decrease in its inventory, the first year the agency has seen a reduction since 2002.

The FY 2011 data also show:

•Due to EEOC’s enforcement programs in both the private and federal sectors, 5.4 million individuals benefitted from changes in employment policies or practices in their workplace during the past fiscal year.
•Through its combined enforcement, mediation and litigation programs, the EEOC was able to obtain a record $455.6 million in relief for private sector, state, and local employees and applicants, a more than $51 million increase from the past fiscal year and continuing the upward trend of the past three fiscal years.

•The mediation program reached record levels, both in the number of resolutions – 9,831 – which is 5% more than in FY 2010 (9,362), and benefits -- $170,053,021-- $28 million more than FY 2010.

•The Commission filed 300 lawsuits and its litigation efforts resulted in $91 million of relief, representing the third year in a row that the relief obtained was greater than in the preceding year. Continuing to build on its commitment to systemic litigation, 23 of the lawsuits filed involved systemic allegations involving large numbers of people and an additional 67 had multiple victims (less than 20).

•The Commission also filed 261 “merits” (merits suits include direct suits and interventions alleging violations of the substantive provisions of the statutes enforced by the Commission and suits to enforce administrative settlements) lawsuits.

•EEOC’s public outreach and education programs reached approximately 540,000 persons.

•In the federal sector, where the EEOC has different enforcement obligations, the Commission resolved a total of 7,672 requests for hearings, securing more than $58 million in relief for parties who requested hearings. It also resolved 4,510 appeals from final agency determinations.

“For the second year in a row, the EEOC received a record number of new charges of discrimination,” said EEOC Chair Jacqueline Berrien. “Nevertheless, the hard work of our employees, combined with increased investments in training, technology and staffing in 2009 and 2010, and strategic management of existing resources made 2011 a year of extraordinary achievements for the EEOC.”

The total number of charges received was up slightly from last fiscal year’s record total. Once again, charges alleging retaliation under all the statutes the EEOC enforces were the most numerous at 37,334 charges received, or 37.4 percent of all charges, closely followed by charges involving claims of race discrimination at 35,395 charges or 35.4 percent. While the numbers of charges with race and sex discrimination allegations declined from the previous year, charges with the two other most frequently-cited allegations increased:

•Disability discrimination--25,742

•Age discrimination—23,465

The agency’s enforcement of Americans with Disabilities Act (ADA) produced the highest increase in monetary relief among all of the statutes: the administrative relief obtained for disability discrimination charges increased by almost 35.9 percent to $103.4 million compared to $76.1 million in the previous fiscal year. Back impairments were the most frequently cited impairment under the ADA, followed by other orthopedic impairments, depression, anxiety disorder and diabetes.

For the first full fiscal year of enforcement, the EEOC received 245 charges under the Genetic Information Nondiscrimination Act, which prohibits discrimination on the basis of genetic information, including family medical history. So far, none of these charges has proceeded to litigation.

The EEOC is responsible for enforcing Title VII of the Civil Rights Act of 1964, the Age Discrimination in Employment Act, the Equal Pay Act, the Americans with Disabilities Act, and the Genetic Information Nondiscrimination Act.


The fiscal year 2011 enforcement and litigation statistics, which include trend data, are available on the EEOC’s website at http://www.eeoc.gov/eeoc/statistics/enforcement/index.cfm.

More information about the EEOC is available on its website at www.eeoc.gov.

DOJ Obtains Comprehensive ADA Agreement with Virginia's Developmental Disabilities System | Jan 2012


The U.S. Department of Justice (DOJ) has reached a detailed settlement agreement that will change the Commonwealth of Virginia’s system for serving people with developmental disabilities, including intellectual disabilities, and resolve violations of the Americans with Disabilities Act (ADA). The agreement expands community-based services so that Virginia can serve people with developmental disabilities in their own homes, their family’s homes or other integrated community settings. Over the next 10 years, Virginia will expand community services by providing home and community-based Medicaid waivers to nearly 4,200 individuals.

Visit "Enforcing The ADA & Other Laws" at:
https://www.disability.gov/civil_rights/enforcing_the_ada_%26_other_laws

Comments on the U.S. Access Board’s Rights-of-Way Guidelines Due February 2, 2012

About this Rulemaking

Available for comment through until February 2, 2012

Sidewalks, street crossings, and other elements of the public rights-of-ways present unique challenges to accessibility for which specific guidance is considered essential. The Board is developing new guidelines for public rights-of-way that will address various issues, including access for blind pedestrians at street crossings, wheelchair access to on-street parking, and various constraints posed by space limitations, roadway design practices, slope, and terrain. The new guidelines will cover pedestrian access to sidewalks and streets, including crosswalks, curb ramps, street furnishings, pedestrian signals, parking, and other components of public rights-of-way. On July 26, 2011, the Board released proposed guidelines for public comment. This proposal incorporates feedback from the public on previous drafts of the guidelines.

For more information visit U.S. Access Board :
http://www.access-board.gov/prowac/index.htm

Illinois Institution closure calls for community support | Opinion | Jan 25, 2012

Letters To The Editor - Chicago Tribune

Access Living applauds Governor Quinn's January 19 decision to close the Jacksonville Developmental Center. For more than 20 years, people with disabilities and their transition from institutions and into their own community-supported homes has been a top national disability advocacy issue. In Illinois alone, if given the opportunity, thousands of currently institutionalized people would choose to live in their own homes.

While Access Living supports the closure of Jacksonville, the announcement to close the state-operated mental health center in Tinley Park emphasizes critical need to ensure that the disabled have quality community support services. Unlike Jacksonville, the Tinley Park Center is not a long-term care residence. Before Tinley Park's closure, Illinois must guarantee that vital, crisis-related services for people with disabilities are available, especially during a transition period. Resource access is vital considering current cut state mental health services.

The process must include the voice of people with disabilities for Jacksonville and Tinley Park. If Illinois collaborates with all involved parties, then less expensive home-based services will save Illinois money, offer community jobs, and recognize the people's disability civil rights to receive support in the most integrated setting.

--Marca Bristo, president & CEO, Access Living, Chicago

http://www.chicagotribune.com/news/opinion/letters/chi-120125bristo_briefs,0,5384639.story

Copyright © 2012, Chicago Tribune

University of Illinois Chicago (UIC) Seeks Entrepreneurs With Developmental Disabilities | Jan 2012

What began as in-depth interviews with nearby social entrepreneurs has since expanded to include social entrepreneurs with developmental disabilities.

The project being carried out at the University of Illinois Chicago represents one of the first and most extensive collaborations with the university’s Department of Disabilities Studies and the business school’s Department of Entrepreneurial Studies.

Their research hopes to discover new employment opportunities for people with developmental disabilities and to bridge the statewide gaps between hiring theory, hiring practice and their relevance to legislative policy.

So if you’re a person with a developmental disability who has started your own social enterprise, or you know somebody who has, UIC wants to hear their story!

To qualify, you must live in the Chicagoland area, be between 18 and 64 years old and be self-employed at a business or non-profit.

You can choose the day time or place, but plan for two interviews, each lasting about an hour.

As compensation for your time, you will receive $30 for being a part of the research.

This is a great opportunity for anyone who has shared their story with LifeMyWay to tell their story again with another advocate seeking to make a difference on a large scale.

For more information, feel free to contact Kate Caldwell at kcaldw3@uic.edu or you can call her: 312-996-4711. Or click here to see the flier in full.

As Posted by lifemyway blog at: http://www.lifemyway.org/ourblog/blogview.asp?blogID=742

Illinois Lawmakers want more information on Gov Quinn closures of Developmental Centers | Jan 25, 2012

By Kurt Erickson Lee Springfield Bureau nwitimes.com | nwitimes.com

SPRINGFIELD | The Quinn administration may have to scuttle its plan to shut down two state facilities without having to explain details of the closures to lawmakers.

The chairman of a legislative panel charged with reviewing the closure of large state institutions said Thursday he wants officials to provide further information about the governor's controversial proposal to shutter the Jacksonville Developmental Center and a mental hospital in Tinley Park.

"It may be a wise decision for the administration to come before the commission to provide additional details," said state Sen. Jeff Schoenberg, D-Evanston, who chairs the Commission on Government Forecasting and Accountability.

The panel, known as COGFA, was formed after former Gov. Rod Blagojevich attempted to shutter state facilities without outside input. Although their decision is non-binding, members of the commission can vote to support or oppose closures.

The panel held a series of hearings last year on an earlier bid by Quinn to close Jacksonville, Tinley Park and five other facilities. In each case, the commission voted to oppose the governor's plan.

When they announced the latest closure scenario last week, top aides to the governor said it would be unnecessary to hold a second round of hearings.

But on Wednesday, after learning of Schoenberg's plans, Quinn spokeswoman Brie Callahan said the administration would attend any sessions the lawmaker schedules.

"While we have not received a request from COGFA, we are, of course, happy to sit down with the members of the committee to give them additional details about our Active Community Care Transition plan," Callahan said.

Quinn has said closing the two facilities will save the state about $19.8 million and allow for the state to begin moving more developmentally disabled residents into community settings.

Key to the savings is that caregivers in private, community-based settings often are paid about one-third less than their state counterparts, even though the administration acknowledges individuals in the state-run facilities tend to be somewhat more complex to serve.

At stake for Jacksonville is the loss of 379 jobs. Tinley Park employs 175 workers.

Schoenberg said he's not sure the latest change warrants a totally new set of meetings, which often can stretch over the course of several weeks.

"We do not need to start the entire process all over. We heard exhaustive testimony just a few months ago," he said. "But, I do want to hear the administration explain its latest plan."

The union representing the more than 550 employees said it would be unfair to move forward without hearing input from those most affected, including individuals with developmental disabilities or mental illness, their families, communities, law enforcement and local leaders.

"We're encouraged that COGFA will carefully examine these proposals as the law requires, and that they will hear the many voices the governor has ignored," said Anders Lindall, spokesman for the American Federation of State, County and Municipal Employees union.

A group representing families of residents at Jacksonville also said holding a hearing was the right approach.

"We're encouraged legislators are willing to hear us out and look forward to making the case to them why Jacksonville and other developmental centers are lifelines that should stay open," said Rita Burke, president of the Illinois League of Advocates for the Developmentally Disabled.

###
.Copyright 2012 nwitimes.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Read more: http://www.nwitimes.com/news/local/illinois/lawmakers-want-more-information-on-quinn-closures/article_324f2ed9-cc66-5bfd-b8a3-079c82ccff65.html#ixzz1kZD8zYUe

Tuesday, January 24, 2012

US Access Board and the ADA National Network - free webinars and audio conferences Feb 2nd, 2012 » Accessible Courthouses and Courtrooms

February 2nd, 2012 » Accessible Courthouses and Courtrooms (available for registration)

The design of courthouses poses challenges to access due to unique features, such as courtroom areas that are elevated within confined spaces. Technical provisions addressing these issues are included in the 2010 ADA Accessibility Standards and the Architectural Barriers Act (ABA) Accessibility Standards. This session will review requirements in the standards that address access to courthouses and courtrooms, including secured entrances, judges' benches, jury boxes, witness stands, clerks' stations, bailiffs' stations, spectators galleries, holding cells, and other spaces.

Submit A Question for upcoming session.

Presenter:

•Dave Yanchulis
Coordinator of Public Affairs
Office of Technical and Information Services
US Access Board

Continuing Education Recognition Available:

•Certificate of Attendance (Free)
•AIA CES (free) : 1.5 Credits
•AICP CES (free) : 1.5 Credits
•LA CES (free) : 1.5 Credits
•UI CEU (free) : 0.15 Credits

To Register visit: http://www.accessibilityonline.org/Schedule/#nextSession

Illinois Circuit Breaker grants 2012 online filing Info, link...

FOR 2013 INFORMATION - CLICK HERE


# # #
The Illinois Department on Aging's Circuit Breaker program provides grants to senior citizens and persons with disabilities to help them reduce the impact of taxes and prescription medications on their lives. When the costs of property taxes and prescription medicines begin to "overload" our seniors and persons with disabilities, this program steps in to help, just as a circuit breaker prevents overloads in an electrical system.

For those who qualify, Circuit Breaker provides:

Tax Grants – If you pay property taxes or mobile home taxes on your home, or if you rent or live in a nursing, retirement, or shelter care home that was subject to property taxes, you may be able to receive a grant.


License Plate Discount – A $75 discount on your license plate fee.


Ride Free Transit Card – If you have a qualifying disability or are 65 years of age or older and meet the income eligibility requirements of the Circuit Breaker program, you may be eligible for free rides on all fixed-route regularly scheduled buses, trains and public transit systems.


Prescription Drug Assistance –
If you qualify for Illinois Cares Rx with the new income levels, beginning September 1, 2011, the amount you pay for each prescription you fill will change. For each 30-day supply you will pay $5 for generic drugs, $15 for preferred brand name drugs, $15 for specialty drugs, and $20 for non-preferred brand name drugs. If you have Medicare, after the total cost of your drugs (the amount you and the plan pay together) reaches $2,840, you will pay 25% of the cost of each prescription, plus the appropriate co-payments ($5, $15, or $20).

If you do NOT have Medicare, after the total cost of your drugs reaches $1,750 you will pay 25% of the cost of each prescription plus the applicable co-payment. If you have Medicaid or the full Income Subsidy (also known as Extra Help) your co-payments will remain the same. If you are in a coordinating Medicare Part D plan, with or without a deductible, Illinois Cares Rx will continue to pay the premium and the deductible if there is one.


For Circuit Breaker property tax grant/ license plate discount and Ride Free Transit card, your total income in 2011 must be less than:

$27,610 for a household of one;
$36,635 for a household of two; or
$45,657 for a household of three.

Income Limits and Requirements for Illinois Cares Rx:

Income Limits

For Circuit Breaker property tax grant/ license plate discount and Ride Free Transit card, your total income in 2011 must be less than:

$27,610 for a household of one;
$36,635 for a household of two; or
$45,657 for a household of three.

Income Limits and Requirements for Illinois Cares Rx:

You would qualify for Illinois Cares Rx if:

You are filing an application for yourself only and your total income is less than $21,780; or
You are filing an application for yourself and your spouse*, or yourself and one Qualified Additional Resident and your total income is less than $29,420; or
You are filing an application for yourself and your spouse and a Qualified Additional Resident(s) and your total income is less than $37,060.
You would qualify for Illinois Cares Rx Plus if:

You meet the income qualifications stated above; and
You have Medicare; or
You are 65 years of age or older without Medicare; and
You are a U.S. citizen or qualified noncitizen.
You would qualify for Illinois Cares Rx Basic if:

You meet the income qualifications stated above; and
You do not have Medicare; and
You are 16 years of age or older but under age 65 and totally disabled, or 65 years of age or older and you do not meet the requirements for Illinois Cares Rx Plus.
* You must include your spouse's income if married and living together on December 31, 2011. If your spouse died during 2011, you would file as single and claim only your income. Do not include the income of a Qualified Additional Resident.

Illinois Cares Rx AIDS Drug Assistance

Illinois Cares Rx provides an additional coordinating benefit for individuals who have Medicare and a diagnosis of HIV/AIDS.* For more information, see What Drugs Are Covered: HIV/AIDS.

The formulary is determined by Illinois AIDS Drug Assistance Program, which is operated by the Illinois Department of Public Health.

** If you currently receive the $25 rebate check instead of help paying for your prescription drugs, the $25 rebate check will be discontinued as of 9/01/11. Your August check, which will be sent in September, will be your last rebate check.

To Apply for Illinois Circuit Breaker grant program visit:
http://www.cbrx.il.gov/

Illinois Gov Quinn Announces Federal Funding to Improve Nursing Home Safety | Jan 24, 2011

Press Release
January 24, 2012

Governor Quinn Announces Federal Funding to Improve Nursing Home Safety
Funding Will Support Landmark Nursing Home Reforms


CHICAGO – January 24, 2012. Governor Pat Quinn today announced $110 million in additional federal funding for enhanced safety, increased staffing and quality standards in nursing homes. Federal authorities approved a federal Medicaid funding match that will allow the state to fully implement the reforms designed to protect frail older adults and persons with disabilities living in long term care facilities. Today’s announcement is the next in a series of steps to improve quality of care at Illinois nursing homes stemming from the work of the Governor’s Nursing Home Safety Task Force.

Under the funding mechanism approved by the U.S. Health and Human Services Department, nursing homes will pay a provider tax that will be pooled, generating the $110 million in federal Medicaid matching funds. The bulk of these funds will be redistributed to nursing homes to enable the homes to pay for the increased staffing and quality standards that are required under the state’s nursing home reform laws.

“This is positive news for people who live in a nursing home or have a loved one living in a nursing home,” Governor Quinn said. “It means that our nursing homes get the funds that they need to continue improving safety and the quality of services that I signed into law as part of our nursing home reforms.”

The funding mechanism is being administered by the Department of Healthcare and Family Services. It will also generate $20 million that will go toward increasing staff at the Illinois Department of Public Health, which will inspect and regulate nursing homes. A portion of the funds will also go toward expanded home and community-based services that serve as an alternative to nursing home care.

“Under the Governor’s leadership, we partnered with state agencies and other interested organizations to bring this policy to fruition,” Pat Comstock, executive director of the Health Care Council of Illinois, said. “Adequate funding for nursing home care will continue to be an important issue, and we must continually look for fair, creative solutions to ensure all nursing home residents in Illinois have proper care and a good quality of life.”

Governor Quinn formed the Nursing Home Safety Task Force in October 2009 to respond to concerns about the safety and regulation of nursing homes. The Task Force held a series of public meetings and recommended legislation to address these concerns. This led to the passage of Senate Bill 326, sponsored by Sen. Heather Steans (D-Chicago) and Rep. Barbara Flynn Currie (D-Chicago). The legislation signed into law by Governor Quinn authorized the increased staffing and safety provisions, as well as revisions to the screening process for nursing homes to protect older adults from residents with a record of criminal violence.

A second law generated by the Task Force, Senate Bill 2863, sponsored by Sen. Jacqueline Collins (D-Chicago) and then Rep. Harry Osterman (D-Chicago), was designed to crack down on fraud, abuse and neglect in nursing homes.

For more information about the Governor’s Nursing Home Safety Task Force, please visit: http://www2.illinois.gov/nursinghomesafety/Pages/default.aspx.

###
http://www.illinois.gov/PressReleases/ShowPressRelease.cfm?SubjectID=1&RecNum=9984

Monday, January 23, 2012

Letter: Praise for Illinois Gov Quinn’s plan Jacksonville Developmental Center | Jan 23, 2012

The Arc of Illinois supports Gov. Pat Quinn’s rebalancing initiative, which is calling for the closure of the Jacksonville Developmental Center.

Illinois warehouses more people with disabilities in state-run institutions than almost any other state, ranking 48th in the nation. This rebalancing initiative begins to correct that inequity by shifting from large state institutions to smaller community-based settings, which means a better quality of life and independence for the people we serve.

This is about providing persons with disabilities the same opportunities we all enjoy. Our priority is to work together to make the transition from Jacksonville into community living safe, comfortable and sustainable. The residents will be engaged in person-centered planning that is fully based upon their individual needs. In this planning process there is every reason to believe that the person can be relocated close to family and friends if that is their choice. They will choose the day services they want to participate in. They will experience the freedom of making real choices about their lives like never before.

There will be an advisory committee involved in the closing of the Jacksonville Developmental Center. Guardians, the individuals from JDC and other advocates should be represented on that committee. This has been the case in other closures.

This is a big step for Illinois and we must do all we can to ensure a safe transition to community living for the people at Jacksonville. We have an excellent opportunity to do the right thing for people with developmental disabilities and to be smart with precious taxpayer dollars.

The governor’s initiative is the right thing to do and the time is now.

— Tony Paulauski, executive director, The Arc of Illinois, Frankfort

Letters To The Editor : The State Journal-Register | Jan 23, 2012

Sunday, January 22, 2012

Coming of Age, A Generation of Autism | 2012

Autism is a developmental disorder that appears in the first 3 years of life, and affects the brain''s normal development of social and communication skills.

The New York Times
A Series of Articles on Autism By AMY LENNARD GOEHNER

As the explosion of children who were found to have autism in the 1990s begins to transition from the school to the adult system, experts caution about the coming wave.

“We estimate there are going to be half a million children with autism in the next 10 years who will become adults,” said Peter Bell, executive vice president for programs and services of the advocacy group Autism Speaks.

Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.

“We are facing a crisis of money and work force,” said Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services. “The cohort of people who will need services — including aging baby boomers — is growing much faster than the cohort of working-age adults that provide care.”

To help parents navigate this difficult journey, in January Autism Speaks introduced a free Transition Tool Kit for parents and their adolescent children with autism. The kit includes information about such critical issues as community life, housing, employment and developing self-advocacy skills. The tool kit can be customized by state for those who register online.

“There is a time you have to get over this hump where you are essentially acknowledging that your child is going to have autism for the rest of his life,” said Mr. Bell, the father of an 18-year-old son with autism. “Our hope with this kit is to help parents to start planning and not get frozen.”

Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

“If an individual needs 24-hour services, the staffing ratio is one to one,” said Charlie Lakin, who heads the Research and Training Center on Community Living at the University of Minnesota. “That means fewer people will get served, resulting in long waiting lists for other families.” Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin.

Living with one’s family may not always be best for a person with autism. Nor is it what many families, who assume their grown child will move into a group home, for example, envision for their future. But options are limited, and given the high demand for out-of-home residential services, Mr. Lakin said, “families really need to think about a longer and more central involvement in their adult child’s life than they have in the past.”

The good news is that many states are providing more support for people with autism who live with their families. They are also giving families greater flexibility and control over budgets with so-called consumer-controlled services, which reimburse families that hire friends or relatives, rather than outside caregivers, for regular care.

Connecticut and Arizona, for example, pay for care provided by family members, a growing trend. Other states, like Pennsylvania, have programs in which contracts are issued for people with autism to live with other families. And Vermont and New Hampshire pioneered a model of providing funding directly to families.

Some families have pooled their own money and entered into cooperatives with other families, a challenge that can take years. Families with children who have developmental disabilities “are relentless advocates and have been the most successful at garnering resources and services,” Ms. Thaler said. “I think it may be the vulnerability of people with developmental disabilities that evokes in families and professionals a level of extraordinary empathy that makes them powerful advocates.”

Among the most powerful advocates are siblings of those with developmental disabilities. “Sibs have always played a really important role; we just haven’t identified them as sibs,” Mr. Lakin said. “We’ve identified them as agency leaders and social workers occupationally. But the real impulse of their work is that they were a sibling.”

Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”

Mr. Lakin said: “It’s really about having people live the best life they can, in the place and with the people they want to live with. There’s no magic to that.”

Bring on the magicians.

By AMY LENNARD GOEHNER | Publish date: 4/13/2011
http://www.nytimes.com/ref/health/healthguide/esn-autism-reporters.html
###

With Autism, One Size Doesn’t Fit All
Expert Q & A

David G. Amaral is the director of research at the M.I.N.D. institute at the University of California, Davis, and the principal investigator of the Autism Phenome Project, an early-phase research study comparing children ages 2 to 3 1/2 who have autism with their peers. The goal is to distinguish different types of autism based on extensive medical exams, gene and blood tests, immune measures, M.R.I. brain scans and other biomedical and behavioral markers. The researchers have recruited just over 300 families for the study and are recruiting additional volunteers.

Q. Where are you in the Autism Phenome Project study?

A. One of the major stumbling blocks of understanding autism is that it’s incredibly heterogeneous. Some kids with autism have severe developmental delays, but others have normal or even enhanced I.Q.’s; some have epilepsy, mental retardation or gastrointestinal problems. You are looking at kids who have very different biological and comorbid features, but all are under the umbrella of autism spectrum disorders. The goal of this project is to identify subtypes of autism. Once we identify those, we believe that we can go after the cause for each one in a more productive fashion.

It is almost certain that autism has multiple causes, and it might be better to study each one independently. We have now tried to do enough behavioral and biological analysis of the kids to see if there are clusters of factors that will allow us to subtype autism.

Now that we have 300 subjects, it turns out the answer is yes. Some of these types may be defined genetically, others by the pattern of brain development and still others by the presence of immune abnormalities.

We’ve just started publishing some papers on the development of the brain of kids with autism. Certain brain regions, such as the frontal lobe and amygdala, seem to have abnormal growth patterns. The amygdala, for example, which controls emotion — particularly negative emotion — undergoes an accelerated growth in about 40 percent of the boys with autism in our study.

Q. What does an enlarged amygdala tell you?

A. Brain growth is like a symphony, and all parts must be developing at the correct tempo. If one grows too fast, we believe that it may develop abnormal connections and ultimately function improperly. The real question is: Why does the amygdala grow out of sync with the rest of the brain?

Q. If the amygdala of a child with autism is enlarged, would that then correlate with a particular subtype of autism?

A. Right. It’s the beginning of being able to develop a subtype. What other features might correlate with the abnormal amygdala growth? We’d like to know what causes this rapid growth so that it might give us some targets for treatment that would be different from treatment of kids whose amygdala is normally growing.

For example, many people with autism have anxiety disorder. And the amygdala is a danger detector and involved in the generation of fear. We typically don’t see a lot of anxiety in kids this young. But as they get older, we’ll be able to determine whether they are showing greater signs of anxiety. So several features would come together that would constitute one type.

Q. How many subtypes of autism do you anticipate you will identify?

A. It’s too early to tell. There are indications that there may be types defined by abnormal brain growth or abnormal immune dysfunction.

Another thing that’s happened is that the field has gotten a clearer understanding of the genetics of autism. I think that it is safe to conclude that there is no single autism gene. We already know of about 20 genes that are risk factors. If there’s a mutation of one of these genes or a loss of the gene or even duplication, it can increase the risk for a person having autism. But if you have any one of those mutations, it doesn’t automatically mean you are going to have autism. And of those 20 genes, there’s not a single one of them that’s associated with more than a few percent of all cases of autism. The punch line is, in autism, one size doesn’t fit all.

. Is there a test to see if a parent is carrying a gene that causes autism?

A. No. The genetics are complicated. Some of the risk factors are hereditary or inherited from a parent. But we’ve also learned that some of the genetic mutations probably occur at conception, where you lose or duplicate DNA.

Q. There’s always talk of environmental triggers for autism. Is that related to the children’s propensity because of their genetic makeup?

A. That’s the most likely guess. You can have genes related to the immune system. And if your immune system is taxed and doesn’t work properly, that could lead to a result where you could alter brain development and go on to have autism. But we really don’t know which genes and which environmental stresses would be coming together.

But there’s evidence now that certain environmental factors contribute bits of risk. Some are surprising. Investigators here demonstrated that families who use flea and tick powder on their pets slightly increase the risk.

Q. Is it the case that the more you discover, the more testing you have to do?

A. What’s encouraging to me is that it’s not chaotic in terms of the data we’re finding. What is also helpful is once you identify one of these patterns, you can go on to do additional studies to understand the mechanisms leading to the disorder. This translates directly to targets for treatment.

Another example relates to the other part of the brain that grows too fast. It is the frontal lobe, located just behind your forehead. This cortical area is involved in social behavior, planning for the future, theory of mind, self-awareness. We’ve found that some of the kids have an abnormally enlarged frontal lobe. We are starting to see in this case that there are some behavioral correlations. For example, whether you have an enlarged frontal lobe or not seems to be associated with whether you had an early-onset versus a regressive form of autism.

Q. What’s the next step?

A. I’m convinced that longitudinal studies are essential to understanding autism. We’ve proven the feasibility of carrying out comprehensive biomedical studies of very young children with autism. We have started pilot studies with even younger children — starting at 6 months of age. These are siblings of children with autism who have a higher risk of also having autism. By studying the development of children over time, we are beginning to identify the most salient changes in their biology. We are seeing facets of autism that we would simply not see if only studying adults. The most striking feature discovered thus far is that the trajectory of brain development is dramatically altered in some children with autism.

Q. Was that a new discovery?

A. Several laboratories have identified abnormal brain growth in autism. This is really a developmental disorder. Something that is happening early on can have an impact on the rest of the development of the child and lead to a lifelong disability.

Q. Parents of children with autism have vastly different descriptions of them. Is that consistent with what you are learning?

A. This is a real reflection of how heterogeneous this disorder is. But if the biology of every kid with autism were unique, we’d never get answers in our research. I do think as we carry out these longitudinal studies, we’re not going to end up with thousands of autism types. I’d guess it will be in the tens, and maybe even fewer. And once we have the different types, what will be illuminating will be, ‘What’s the overlap between the different groups?’ There are behavioral similarities, and there may be biological similarities. Just as many tributaries feed into one main river, it may be that different genetic and neurological problems feed into one final common pathway that produces the behavioral characteristics of autism.

Q. You sound optimistic about someday finding a cure. Are you?

A. Over the last 10 years I’ve seen the amount of resources dedicated to research increase tremendously. The first stage to solving autism is to bring some clarity to what autism is. I think we’ve made really huge strides over the last decade. The Autism Phenome Project is a reflection of the intensity of effort in the field.

We also need to be very careful in using the word “cure.” I much prefer to think about decreasing disability and increasing the quality of life for individuals with autism. There are individuals on the autism spectrum that have very special talents and abilities. Would we want to “cure” these? Obviously not. I am optimistic that we are getting closer to an understanding of the biologies of autism and that this understanding will give us much clearer targets for prevention and treatment of the most serious forms of the disorder.

By AMY LENNARD GOEHNER | Publish date: 4/13/2011
http://www.nytimes.com/ref/health/healthguide/esn-autism-expert.html?pagewanted=1
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What to Ask About Autism
Questions for Your Doctor

Confronting a new diagnosis can be frightening and, because research changes so often, confusing. Here are some questions you may not think to ask your doctor, along with notes on why they’re important.
How do I know if my doctor is the right doctor to treat my child?

“You might want to ask your doctor if he or she treats other kids with autism,” said Dr. Fred Volkmar, head of the Yale Child Study Center and co-author, with his wife, Dr. Lisa Wiesner, of “A Practical Guide to Autism.” “You’re really trying to tap in to someone who is willing to take questions seriously and look into them and not say, ‘That’s the craziest thing I ever heard.’ ”

How can I help my child go to doctor and dentist appointments without her throwing a huge tantrum?

“There’s a lot you can do to detox the visit for the child,” Dr. Volkmar said. “You can buy a pretend stethoscope or make your own picture books. There are programs on the iPad and iPhone called iPrompts, which is a visual program for people with autism. Walk the child through what’s going to happen. The same with dental visits. It may take 10 visits before the child will sit in the chair. But most of the time you can actually get to the point where you can get the child to tolerate most of this stuff.”

My child is nonverbal. How can I tell when something is hurting him?

“We know that autism is a multisystem disorder,” said Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore. “When it’s not evident that there’s a certain body system that’s working as it should, we have to look to other indicators. Any time there’s an alteration in the child’s behavioral pattern, this could tell us something we need to be paying attention to medically.”

My child doesn’t have the social skills to play sports, yet I know he needs to get exercise. What can I do?

Dr. Volkmar said: “There are individual sports like swimming, tae kwon do, jujitsu, which are one on one. They are very ritualized and predictable, so those sports are good for kids with autism. Also horseback riding.”

There are so many support groups, especially for parents like me who are reeling with this new diagnosis. How do I know which ones to join?

Dr. Landa cautions: “You need to be careful about being with people who haven’t been able to move forward. You want people who are going to help you get new perspectives. Parents who have had children who have had really challenging courses can be an enormous sense of inspiration, telling you what they’ve done to overcome obstacles. And be careful of the people who claim to have the cure.” Dr. Cece McCarton, director of the McCarton Center for Developmental Pediatrics in New York City, emphasizes that need for support. “I try to tell the folks who come to see me, ‘This is not a disorder that you can battle by yourself,” Dr. McCarton said. “Just like it is pervasive within the child, it’s pervasive within the whole family structure.’ ”

I want to learn all I can about autism to help my child. But there is so much information on the Web. How do I know what to trust?

Dr. Volkmar said he and his staff typed in “autism” on a search engine and looked at the top 100 Web sites that came up. “One third of them are either promising a cure or selling something,” he said. “The Web sites that tend to be the best are the government and educational Web sites.”

How do I know if the therapists who are treating my child are actually good?

Because the number of children with autism is so great, while there are a lot of great therapists, there are also a lot who are not up to speed. Dr. McCarton tells parents to make a video of the child’s therapy session and send it to her. She said: “The child is a moving target, so a good intervention program is constantly changing with the developmental skills of the child. It’s not set in stone.”

My child is involved in so many interventions, it is hard to keep track of everyone and all the things I am supposed to be doing at home to help him progress.

There might be a number of people treating your child (like speech, occupational and behavioral therapists), and they need to be communicating with one another to be sure everyone is on the same page. While Dr. McCarton says it can be very helpful for parents to have a team “manager,” she cautions that if one person does take charge, “it has to be somebody knowledgeable who commands the respect of all the disciplines.”

I feel guilty spending all my time with my child with autism and ignoring my husband and other children. But I feel my disabled child needs me most.

Experts agree that if all the attention is focused on one child, the balance gets tilted: everyone in the family has needs that must be met. “It’s often mothers who bear the brunt of this; they wear themselves out,” Dr. McCarton said. “We encourage moms to do something other than just care for this child, whether a hobby or interest, or if they work — please don’t quit. It’s an escape! We try to get fathers together with other fathers, go out for a beer and let their hair down and talk about the situation in guy talk.

My younger son loves his brother, who has autism, but he gets angry that he won’t play with him and is embarrassed by his behavior. How can we help our younger son understand his brother’s disability?

Doctors often encourage the other siblings in the family to be included in therapy sessions. “Siblings are terrific role models,” Dr. McCarton said. “We try to facilitate the play between the two siblings so the sib without autism can begin to appreciate their sib who does have autism and make a connection with him or her.” There are also workshops for siblings of special-needs children, like Sibshops, offered throughout the country.

Every time I’m with other parents someone is talking about some new therapy, which of course makes me guilty I haven’t tried it yet. How do I know what to trust?

Experts agree: consumer beware. “I get asked constantly about 25 alternative therapies that are out there, such as diets, vitamins, swimming with dolphins,” Dr. McCarton said. “It’s a learning process for most people.” Parents should do their homework and not rush into anything that doesn’t have a proven track record.

My child is up and walking about all night. We’re exhausted!

Sleep problems are common in children with autism, and can may result from lack of exercise or lack of a consistent bedtime routine. In “A Practical Guide to Autism,” Dr. Volkmar recommends keeping a diary for one to two weeks to try to understand the problem better; increasing exercise and decreasing daytime sleep; and avoiding foods, drinks or activities that overstimulate the child at bedtime. He also recommends the book “Sleep Better! A Guide to Improving Sleep for Children With Special Needs,” by Vincent Mark Durand.

This is my first child, so I don’t really know if he is reaching his developmental milestones on time. Is there a test he should be given to tell if he has autism?

There are no blood tests to determine whether a child has autism. A doctor can make a diagnosis based on the child’s behavior and development. The federal Centers for Disease Control and Prevention recommends screenings for developmental delays and disabilities during well-child doctor visits at 9 months, 18 months and 24 or 30 months. Additionally, a specific screening for autism spectrum disorders should be made at 18 months and 24 months. Children who are at higher risk for an autism spectrum disorder, including those with a family member who has such a disorder, might need additional screening.

By AMY LENNARD GOEHNER
http://www.nytimes.com/ref/health/healthguide/esn-autism-questions.html

For More Articles On Autism from The New York Times visit:
http://health.nytimes.com/health/guides/disease/autism/overview.html?inline=nyt-classifier

State of Illinois must keep Jacksonville Developmental Center promises to families | Opinion Jan 22, 2012

Our Opinion: State must keep JDC promises to families
The State Journal-Register

Jacksonville Developmental Center has for years stood as a relic of an antiquated approach to caring for the developmentally disabled.

The state’s announcement on Thursday that JDC will close later this year — after its residents have been evaluated and moved into appropriate community care settings — is an important, much-belated milestone. It’s the first step toward moving Illinois away from its excessive reliance on large institutions to house and treat its developmentally disabled citizens.

We’re aware that the closing of JDC brings with it an economic cost to the Jacksonville community. The center employs 379 people in a town that has been hard hit by the loss of industry in recent years. But establishment of community care should absorb many of those jobs, and could create more.

We’ll be attentive in the coming months to make sure the state keeps its promises to residents and their families. It’s critical that no one feel left out of this process. Overall, though, we’re pleased that Illinois finally is moving out of the dark ages in giving its most vulnerable citizens the best care possible.

In state after state, the institutional model of treatment has been judged ineffective, inefficient and inferior to housing developmentally disabled people in small, residential settings. Thirteen states and the District of Columbia have closed all their state institutions for the developmentally disabled. Illinois, meanwhile, has the third highest population of institutionalized individuals of any state. Even after closing JDC, it will retain that rank.

Advocates for the disabled have for years urged the state to move away from institutional housing and treatment centers.

“This is long overdue,” said Don Moss, director of United Cerebral Palsy of Illinois. “All such institutions should go the way of orphanages and no longer be part of the social service system in Illinois.”

Treatment and care for the developmentally disabled has as its foundation two goals: to allow the disabled to live as productive and fulfilling lives as possible despite their disabilities and to be as active members of society as possible. Institutional settings too often work against those goals by establishing firm separation between residents of the institution and the society outside its walls.

Now comes the real challenge. The 185 residents of JDC must be carefully assessed according to their individual needs as this transition is made. For some, JDC has been home for many years. Some may have had bad experiences in group home settings before coming to JDC. The coming move must not induce anxiety among those it is intended to help.

“We would like to impress on the public that these are not cattle to be moved out 20 a month. These are human beings,” said Rita Burke, president of the Illinois League of Advocates for the Developmentally Disabled.

In making the announcement last week, however, officials voiced confidence that residents’ needs are paramount in this process and that there is no degree of disability that can’t be better addressed in a community setting.

“We can support anybody with almost any type of disability in the community if we are smart in how we arrange the supports and put the resources behind it,” said Mark Doyle, who is heading up the transition effort for the Department of Human Services.

# http://www.sj-r.com/opinions/x1251828908/Our-Opinion-State-must-keep-JDC-promises-to-families?zc_p=0

The facts on Gov Quinn plan to close Illinois Developmental Center facilities | AP Jan. 21, 2012

By Christopher Wills, Associated Press


SPRINGFIELD, Ill. (WTW) — Gov. Pat Quinn is launching a major push to move mentally ill and disabled people out of institutions and into communities. That means big changes for hundreds of people in state care, economic blows to the towns where facilities will be closed and turmoil for the government employees losing their jobs.

Most advocates for the disabled back the plan but wonder whether sick or disabled people will get the necessary care in group homes or living with their families. Others wonder why the Jacksonville Developmental Center and the Tinley Park Mental Center are first on the list to close.

Here's a look at some of the issues and the facts behind them:

"OBJECTIVE"(equals)

The administration says the Jacksonville and Tinley Park facilities were the first picked for closure because they scored worst in rankings based on objective criteria like physical condition, difficulties in recruiting staff and economic impact on the surrounding communities.

You'll have to take Quinn's word for that, however. He won't release those rankings, so there's no way to tell how Jacksonville compared to similar facilities in Anna or Chester, or how Tinley Park matched up against other mental hospitals.

The governor is releasing the final scores for the two facilities, but knowing that Jacksonville was rated a 3 on staff recruitment doesn't allow for comparisons to other institutions. Quinn isn't releasing any of the data his staff used to calculate the scores, making it impossible to review the work and check for potential errors.

Rep. Jim Watson, R-Jacksonville, was one of four lawmakers asked to give the administration input on the criteria for closure. He complains that he was denied information about how the administration ranked the facilities and got the sense that Quinn's team made its decision and then adjusted the criteria to fit.

"ON THE BACKS"(equals)

Some critics accuse Quinn of trying to balance the state budget on the backs of disabled people. If Quinn is doing this to balance the budget, he's going to be sorely disappointed.

His aides say the goal is to improve people's lives, not save money. They predict closing the Jacksonville and Tinley Park facilities will save about $20 million, but state government needs to find billions of dollars to meet next year's obligations and pay off old bills.

Critics may object to closing the facilities — and cutting jobs for some 550 people — but the decision doesn't dump all the state's financial problems into the laps of the patients and employees.

The administration says caring for someone with developmental disabilities in an institution costs between $150,000 and $210,000 a year. Caring for that person in a community setting will cost from $45,000 to $84,000 a year, according to administration estimates.

The administration's predictions of lower costs in community settings are challenged by the American Federation of State, County and Municipal Employees. The union said the lower figure does not include the medical care delivered to people when they live in institutions, a claim that Quinn's office did not immediately respond to.

Tony Paulauski, executive director of the advocacy group Arc of Illinois, said developmentally disabled people living in the community can get the same level of care, 24 hours a day, that they get in institutions. He described Quinn's plan as thoughtful and potentially a model for other states.

"THESE ARE NOT CATTLE"(equals)

The Illinois League of Advocates for the Developmentally Disabled claims Quinn would thrust institutionalized people into potentially unsafe new living arrangements.

"These are not cattle," said Rita Burke, president of the group, which is made up of leaders from the family associations at the various institutions.

Quinn's team insists the disabled people and their families will make the ultimate decisions on living arrangements. They will work with experts to determine the best option. It could even be staying in an institution, although not the one in Jacksonville that's being closed.

Officials acknowledge Illinois does not have community slots for all people with developmental disabilities who need them. But they say that's true whenever a state moves away from institutional care — first the states decide to emphasize community care, then they work with providers to create the slots and finally people move into their new homes.

Moving to community care is backed by most advocates for the disabled. Thirteen states and the District of Columbia have completely done away with institutions for people with mental disabilities.

A shift to community care is also the law, thanks to various court rulings and lawsuit settlements, and it's the policy that Illinois lawmakers overwhelmingly endorsed last summer.

A sibling with developmental disabilities can be a lifetime commitment | Jan. 20, 2012

Caring for a sibling with developmental disabilities can be a lifetime commitment

Written by Cheryl Anderson | Appleton Post-Crescent

{photo: Ashley Baldwin (left) and her sister, Katie Ketter, spend time playing games at Baldwin's home in Appleton. Baldwin is preparing for the day when responsibility for her sister's well-being will fall to her. / Post-Crescent photo by Ron Page}

Katie Ketter loves to joke around at least a couple times a week with her big sister, Ashley Baldwin.

“Recently we started swimming together at the Y,” Baldwin, 27, of Appleton, said of Ketter, 24. “Katie will stop over on the weekends and I help her print out her pictures; she just got a new camera.”

At the end of November, Ketter, who is cognitively disabled, also began a new stage of life — she’s moving out of her parent’s Appleton home and into a privately run adult family home in Darboy.

“She loves it,” Baldwin said. “She’s staying pretty active in the community and she’s still really involved in Special Olympics and Arc (Fox Cities) activities. She’s really doing well.”

A big reason the transition was easier for Ketter and her parents was the knowledge Baldwin gained two years ago attending Future is Now, a program for adults concerned about the future of their adult siblings with disabilities that’s offered by the Fox Valley Sibling Support Network. A new two-part session will be held Jan. 28 and Feb. 25 at Touchmark on Prospect in Appleton.

“In talking to siblings I’ve gone to the meetings with, it’s almost our biggest worry in life. What are we going to do about our siblings’ future,” Baldwin said. “And how do we make sure we do the best thing for them?”

Seventy-five percent of adults with developmental disabilities live with their parents, according to FVSSN executive director Harriet Redman. Research shows, only 25 percent of those parents ages 60 and older have made plans concerning the future living arrangements for that adult child when they no longer can provide care. Fewer still are the number of parents who’ve discussed those plans with their other adult children, often leaving siblings of the adults with disabilities in the dark.

“It’s inevitable that something will need to be adjusted in that plan,” said Redman, adding there are many reasons why adults with disabilities may still be living at home. “Sometimes there’s no other options or they’re on a waiting list, which is often the case, or they don’t have funds for services. Or parents are just protective and don’t trust institutions or other people. Or they become companions to the elderly mother or father. So there are lots of reasons; some are better than others.

“But when that’s going on and there are other siblings, those siblings — depending on where they are in life — may have had very little to do with their brother or sister’s care … or they may not even know who their sibling’s doctor is because their parents have said don’t worry about this. They are protecting their other kids as well as their child with the disability.”

But having that conversation with parents can be very difficult, and, Redman said, the No. 1 barrier. No one wants to rock the boat, and very often the parents don’t really have a plan in place. They just assume everything will work out fine.

“My family didn’t want to talk about the ‘what if’s’ in life,” Baldwin said. “So we went through Future is Now as a platform to bring up those difficult discussions with my family — planning for Katie’s life after my parents.”

Although she’s been attending offerings at FVSSN for about eight years, Paula Hoglund, 59, of Appleton and her three sisters had to figure out on their own what the best options were for their brother, John Stevenson, 53, who has Down syndrome, when their aging mother was diagnosed in 2004 with cancer. Stevenson had lived with his mother his entire life, and she’d made no plans for his future.

“Our aging parents, despite the odds, kept their children at home back in the ’50s and ’60s when the standard advice was to institutionalize your challenged child,” Hoglund said. “These were very strong parents to blaze trails and keep their children at home. They developed programs and raised their children and made that big commitment to their child early on, never really dreaming their children would again defy predictions and live to this age. And they really didn’t think they’d have to be dealing with these issues at their age.”

When Hoglund’s mom became so sick she could no longer care for Stevenson, the family was fortunate to get him into a group home in Appleton. “So it was a blessing in disguise for us,” Hoglund said.

When his mother died in 2009, Stevenson didn’t have to deal both with the death and a change in residence.

“Like any one of us planning for retirement, we don’t know what life in the future’s going to be like,” Redman said. “But most of the time if you have some preparation in place … you’re going to have peace of mind. The transition … will be a lot smoother.”

While many siblings of adults with disabilities eventually become their guardians, they don’t want to be the parents. “They want to stay a sister or a brother,” Redman said. “They want to have that kind of relationship, they don’t want to be the bad cop.”

Siblings in this situation, she added, are part of what’s called the club sandwich generation, a spin-off of the term sandwich generation, a generation caught between caring for their children and their aging parents. Members of the club sandwich generation have the added responsibility of providing support for grandchildren, or in this case, adult siblings with a disability.

“Do we take the complexity away? No,” Redman said of Future is Now and other programs offered by FVSSN. “What we do is help them connect with other people who have similar experiences and they can share. And often in that process, they gain confidence, encouragement and empowerment. All of that can be really helpful to tackle planning.”

The support network also connects them with local resources — attorneys, county officials, the Aging & Disability Resource Center and housing officials — so when the time comes they know somebody they can call. It’s still a complex process, but with connections it can give them the courage to proceed.

The knowledge gained at Future is Now benefitted Baldwin and, most importantly, Ketter.

“It was extremely helpful in encouraging my parents, and just kind of teaching them the importance of a special-needs trust to ensure the long-term care for Katie and also to encourage them to write a will, which are all things they did as a result of the Future is Now program,” said Baldwin, who will serve on the panel for the upcoming workshops to share her knowledge.

Special-needs trusts are an important element in planning for loved ones with disabilities. It’s a specialized legal document that ensures that the inheritance a parent wants to leave him or her will be used for his or her benefit.

Future is Now emphasizes peer support and allows siblings of adults with disabilities to get connected to local resources that can help them with planning.

“As a network, that’s our basic mission — to connect,” Redman said.

# http://www.postcrescent.com/article/20120122/APC04/120120138/Caring-sibling-developmental-disabilities-can-lifetime-commitment-