JFActivist

March is Brain Injury Awareness Month

From the Brain Injury Association of America:

Brain Injury Awareness Month 2009

Did you know March is Brain Injury Awareness Month? It is and each March the Brain Injury Association of America (BIAA) and the BIA chartered state affiliates throughout the United States partner together with other organizations, businesses, schools, survivors and their families and others to generate awareness and understanding of brain injury. This year’s focus is dedicated to Sports & Concussions, specifically youth sports.

According to the Centers for Disease Control and Prevention (CDC) an estimated 1.6-3.8 million sports and recreation related concussions occur in the U.S. each year. Concussions occur even if an athlete doesn’t lose consciousness and in fact, is the most common type of brain injury sustained in sports...

... Throughout the month of March BIAA, BIA chartered state affiliates and others will promote sports and concussions awareness and understanding through open houses, special events and media opportunities to name a few. A web banner, a fact sheet, Tracy’s Story; words from a student athlete who sustained a brain injury and other resources are available by download to the public and our partners. (See downloadable files below.)

To learn more about what events are taking place in your community, or state during March, or to get involved contact your local chartered state affiliate, or the BIAA office today.

>>> For the Full Announcement,
Awareness and Publicity Materials

OH Action Alert: Segregated Schools Use Fear Tactics to Seek Continued Funding

From the Ability Center of Ohio (Feb. 23, 2009):

The below letter appeared in the Stark County Board of MRDD newsletter. Something similar was published in the Canton Register.

Stark County still operates schools within the MRDD System. As they are trying to pass a levy, discussion has transpired about the possible need to close these segregated schools. The writer claims, among other things, that sending students with significant disabilities to the area's public schools would be harmful to those public schools. Read on below...

I realize that most of you are not from or even near the Stark County Ohio area however I think that some very pointed letters from you would be powerful. Please let me know if you are willing and able to do so. This just has to stop! The right to live, work and recreate in the community as adults with disabilities begins with the right to be educated there as well!

*** Take Action ***

Contact the following superintendents and let them know that everyone wins with inclusive education.

Larry Morgan

Superintendent,

Stark County Educational Service Center

2100 38th St. NW

Canton, OH 44709

330-492-8136

 

Mike Miller

Superintendent

Stark County Board of MRDD 

2950 Whipple Ave. NW

Canton, OH 44708

330-477-5200

Letter from Superintendent Morgan: 

Closing Stark MRDD Schools Would Threaten the Public School System.

Here's why:

Dear Dawn,

The financial crisis facing the Stark Board of Mental Retardation and Developmental Disabilities could have serious consequences for every public school district in the county.

Let me explain. Stark MRDD operates what amounts to an entire school system that educates individuals with mental retardation, developmental disabilities, life-threatening medical conditions, severe behavioral issues, autism, attention deficiet and hyperactivity disorder. These children often begin MRDD programs in infancy and continue through the age of 22.

In addition to providing the best possible service to this vulnerable population, the Stark MRDD school system is the only way vital services cost-effectively.

Here's why: Rebecca Stallman Southgate School and Eastgate Early Childhood and Family Center consolidate the facilities, services and personnel needed to educate individuals with profound disabilities.  This creates economies of scale.  Without Stallman Southgate and Eastgate, students would by law have to be educated through their local public school districts. Imagine the cost to each school of adding special education teachers, medical personnel, therapists and specialized transportation capabilities to serve just a few children.  Some schools might face significant capital expenditures just to make buildings fully accessible. 

At the same time, every local school district is facing its own financial crisis and struggling to provide the best education possible to the county's nearly 63,000 students. Schools cannot afford to take on additional costs.

That, in brief, is why the Stark County Education Service Center and superintendents across the county are supporting Stark MRDD in its effort to keep the schools open.

We hope you will do the same.

Sincerely,
Larry Morgan,
Superintendent
Stark County Educational Service Center

 

$250 SSDI Stimulus Checks Explained

IMMEDIATE RELEASE

Social Security Disability Insurance Recipients To Get Extra $250 By Summer

Allsup explains one-time $250 bonus coming from $787 billion national stimulus package

Belleville, Ill. – Feb. 26, 2009  – Social Security Disability Insurance recipients can look forward to receiving a one-time $250 bonus payment by early summer, according to Allsup, which represents tens of thousands of people in the Social Security Disability Insurance (SSDI) process each year. The American Recovery and Reinvestment Act of 2009, recently signed by President Obama, launches a $787 billion national economic stimulus package that includes the one-time $250 payments to those eligible for SSDI, Social Security retirement, Supplemental Security Income (SSI), railroad retirement benefits and U.S. veterans disability compensation or pension benefits.

“This additional income, though minimal, can help offset the rising costs for people with disabilities,” said Paul Gada, personal financial planning director at Allsup. “Recipients may want to consider using it toward healthcare costs, especially if they are still in the 24-month waiting period to become eligible for Medicare benefits.”

The good news is even better for couples who receive Social Security benefits—because each recipient will receive a one-time $250 payment. “That means you’ll have an additional $500 in income available, which could be an important cushion,” said Mr. Gada. “For example, this amount could be put toward an emergency fund.”

SSDI is a federally mandated insurance program overseen by the Social Security Administration (SSA) that operates separately from the retirement and SSI programs. SSDI provides monthly benefits to individuals who are under full retirement age (age 65 or older) and who can no longer work because of a disability (injury, illness or condition) that is expected to last for at least 12 months or is terminal. Individuals must have paid FICA taxes to be eligible. More details are provided in the “SSDI Overview” on Allsup.com.

More Details On The $250 Bonus Payments
To help clarify details about the $250 bonuses to SSDI recipients, Allsup has outlined answers to common questions about the one-time payment.

Who is eligible for the $250?
Anyone who was receiving SSDI benefits anytime during the three-month time period of Nov. 1, 2008, through Jan. 31, 2009 will receive a bonus check. In addition, beneficiaries in the Social Security retirement, SSI, railroad retirement and veterans benefits programs are eligible.

What if I got my SSDI in February 2009?
Unfortunately, you will not receive the one-time $250 payment because your entitlement date was after Jan. 31, 2009.

When does the payment go out?
The Social Security Administration expects everyone who is entitled to receive their payment by late May 2009.

If I’m eligible, how do I get the payment?
You do not need to do anything. There is no paperwork required. You will receive the additional payment automatically using the same method that you receive your regular benefits (i.e. direct deposit, mailed check).

Will I get more than one $250 payment?
Recipients are only entitled to one $250 bonus. It does not matter if you are on both SSDI, SSI or other benefit programs.

My children get dependent benefits, so will they also get a $250 bonus?
No, children under age 18 (19 if still in high school) who receive Social Security benefits will not receive a bonus. However, disabled adult children will receive a payment.

If my spouse and I are both on Social Security, do we only get one $250 payment?
No, each adult receiving Social Security benefits will receive a $250 payment. This means both you and your spouse will receive payments.
 
Will this payment affect my taxes?
No, the one-time $250 payment will not be counted toward gross income for your federal income tax.

What if I don’t get the payment?
If you don’t receive a payment by June 4, 2009, the SSA recommends contacting your local Social Security office or calling (800) 772-1213 to report that your payment did not arrive.

ABOUT ALLSUP
Allsup, Belleville, Ill., is a leading nationwide provider of financial and healthcare related services to people with disabilities. Celebrating its 25th anniversary in 2009, Allsup has helped more than 110,000 people receive their entitled Social Security Disability Insurance and Medicare benefits. Allsup employs more than 550 professionals who deliver services directly to consumers and their families, or through their employers and long-term disability insurance carriers. For more information, visit www.Allsup.com.

Diversity Overkill? TV Network Attacked for Disabled Host

Co-host Cerrie Burnell was born with a disability that left her with an incomplete right arm. Some parents say she may frighten children; other accuse the BBC network of going overboard in the interests of diversity. (Image from BBC)

From the Today Show (Feb. 26, 2009):

One-armed TV host scares kids, parents say

Experts say that adults’ wariness of BBC TV show host is ‘old-fashioned’

When the BBC hired a pretty young actress to co-host a daily program for toddlers, it never expected viewers to complain that the young woman might give their children nightmares...

...The viewer’s problem? Burnell was born with an incomplete right arm that ends in a stump below her elbow.

According to a BBC report, most viewers have been supportive of Burnell, who took over a daily slot on the BBC’s children’s network, CBeebies, at the beginning of February with Alex Winters. But a handful have written to the station complaining about her disability. Some say she may frighten the children. Others accuse the network of going overboard in the interests of diversity. Some say they don’t want to have to address such issues with very young children...

>>> For the entire article

From Digital Spy (Feb. 23, 2009):

BBC defends disabled presenter

By Dan French

... CBeebies controller Michael Carrington described Burnell, who was born with one arm, as "warm and natural", adding that her disability should not be an issue.

"She was appointed because she was the best person for the job. We see no reason for her to try to hide her disability and are surprised that in 2009 this should even be raised as an issue," said a BBC spokesperson.

Burnell revealed that she hopes her disability can be used to raise awareness. "It can only be a good thing that parents are using me as a chance to talk disability with their children," she said...

>>> For the Full Article

Action Alert: Include Longterm Services in Healthcare Reform

ACTION ALERT:
Call to Make Sure Long-Term Services and Supports
are Included in Health Care Reform

Background:
President Obama has clearly stated that health care reform is a priority for this year.  Long-term services and supports are an essential part of health care reform that must be included.  The nation lacks a comprehensive national public-private system for financing and delivering long-term services and supports for individuals with disabilities and seniors.  
•    While over 45 million Americans do not have medical insurance, over 200 million Americans lack any insurance protection for the costs of long-term services. 
•    Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.
•    There is an institutional bias within Medicaid that does not provide Americans with equal choice for home and community services.
•    Hundreds of thousands of individuals with disabilities and their families are on waiting lists for Medicaid home and community-based services.
•    There is a crisis in the availability of professionals to provide direct supports, which jeopardizes the health, safety, and ability of individuals with disabilities to be active members of society.

CCD and the Leadership Council of Aging Organizations (LCAO) have developed joint principles on financing of long-term services and support.  The Senate Special Committee on Aging is holding a hearing next week on long-term services.  CCD and LCAO are hosting a national call-in day on March 3 to encourage Senators to include long-term services and supports in health care reform.

Call-In Information:
When:             March 3 (Between 8AM and 5PM EST)
Call-In Number:       1-800-958-5374

You will be asked which state you are calling from and will be connected to your Senators’ offices.  Below is a sample script to leave a message.

Hello (state name and where you are calling from).  I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. The nation lacks a comprehensive national public-private system for financing and delivering long-term services and supports for individuals with disabilities and seniors.  We need a national solution for this national problem.  Please ensure long-term services and supports are included in upcoming hearings and legislation.  Thank you.

Take Action: End Involuntary Sterilization in Illinois

From F.R.I.D.A. (Feminist Response in Disability Activism) (Feb. 25, 2009):

>>> ACTION STEPS BELOW <<<

End Involuntary Sterilization in Illinois Now!
Fact Sheet on House Bill 2290 (Sterilization of Adults with Disabilities Under Guardianship)

Background

In Illinois, the Probate Act of 1975 outlines the general duties for guardianship of an adult with a disability (i.e., a ward).  However, currently there are no guidelines for when a guardian seeks to have the ward sterilized.  As a result, the involuntary sterilization of people with disabilities can be abused.  It is possible for a guardian to violate a person’s basic right to not be sterilized without knowledge and/or consent.  Most states in the U.S. have due process protections to prevent this extreme, irreversible and dehumanizing situation… but unfortunately Illinois is still one of 16 states lacking any protections against sterilization without consent.

What Has Been Happening without HB 2290

-    One guardian (the mother of the ward) did not seek the court’s authority to consent to her daughter’s involuntary sterilization. The intent of the guardian to have the woman sterilized was discovered when her father received notice that his insurance policy would not cover such a procedure. The father then interceded on his daughter’s behalf.

-    The guardian of a young woman with a traumatic brain injury filed a petition to have her involuntarily sterilized.  The woman had no knowledge of the pending petition, even though she had been using different kinds of contraception successfully for years, and expressed the desire to get married and raise a family one day.

Because Illinois law does not require a guardian to file a petition under these circumstances, many of these cases never come before the court.  Instead, the guardian and the physician make the decision for the ward, without any independent representation or protection of the ward’s interests.

Note: Many parents of adult children with disabilities are not the legal guardians of their children (although they may think that they are), and have NO legal authority to seek sterilization of their adult children.  However, physicians unaware of this fact may agree to do a sterilization based on the parent’s consent, without realizing what they are doing is illegal.

So How Does HB 2290 Address This Problem?

HB 2290 updates the Probate Act of 1975 by adding a new section which says that:
-    The guardian must file a motion requesting the court’s authority to consent to the sterilization procedure (except when a procedure is necessary to save the ward’s life or to prevent harm to the ward);
-    An independent counsel should be appointed if the court finds it best serves the ward’s interest or if requested by the ward, or if the ward objects to sterilization;
-    The court should seek a medical and psychological evaluation of the ward;
-    A determination by the court of the ward’s capacity to consent or not consent to the proposed sterilization:
-    If the ward has such capacity, there must be an entry of an order that respects the ward’s decision;
-    If the ward lacks such capacity, there must be a determination of the ward’s desire regarding the proposed sterilization.  If the ward has not clearly expressed a desire for sterilization, there must be proof of specific factors by clear and convincing evidence;
-    If the court determines the ward lacks such capacity, there must be a determination of the ward’s best interest in accordance with certain standards; and
-    The resulting court order will include written findings of fact and conclusions of law.

TAKE ACTION: So what can you do to help?              

We need this bill to pass the Illinois House of Representatives NOW!

1.  Look up your rep at
http://www.elections.il.gov/DistrictLocator/SelectSearchType.aspx?NavLink=1. 

Right now, we especially want to reach representatives who are on the Judiciary Civil Law Committee
(http://www.ilga.gov/house/committees/members.asp?committeeID=595). 

2. Contact your state representative and ask them to sponsor H.B. 2290 TODAY!

3. If you are with an organization, have your organization join our FRIDA website list to support H.B. 2290! 

Organizations Supporting H.B. 2290: FRIDA, Equip for Equality (special thanks to EFE for providing the information on this fact sheet), and the ACLU of Illinois.

For more information, or to sign onto our list of organizations supporting H.B. 2290, visit www.ourfrida.org, or contact FRIDA member Michelle Robbins at (915) 496-5468 or
free_our_people@yahoo.com. 

New Prenatal Downs Syndrome Tests Raise Concern

Excerpts from the Washington Post (Feb. 26, 2009):

New Safety, New Concerns In Tests for Down Syndrome
By Rob Stein

A handful of biotech companies are racing to market a new generation of tests for Down syndrome, a development that promises a safer way to spot the most common genetic cause of mental retardation early in pregnancy even as it weaves a thicket of moral, medical, political and regulatory concerns...

...With the first new approach due to become available this spring, the tests are renewing questions about why regulators do not require such innovations to be proved reliable before being offered to the public.

Abortion opponents, meanwhile, fear that the technology may prompt more couples to terminate pregnancies. And advocates for the disabled, noting that couples are often poorly informed about the syndrome, worry that more of them may feel pressured to abort. They also fear a dwindling number of those born with the condition, along with the prospect of increased discrimination against them and their families.

"We have a history in this country of a eugenics movement where people tried to eliminate certain people from the gene pool," said Andrew J. Imparato of the American Association of People With Disabilities. "People could start wondering, 'How did you get born?' " ...

...The new tests for Down syndrome come as advocates pressure Congress to fund a law passed last year aimed at ensuring that couples get accurate information about genetic conditions and at providing support for women who decide to keep their affected children or put them up for adoption.

"These tests make this all the more important," said Madeleine Will of the National Down Syndrome Society, which is seeking $25 million over five years to implement the legislation. Society members are gathering in Washington this week to lobby on this and related issues...

>>> For the Full Article

Genetic Discrimination Ban Gains Ground

From the Washington Post (Feb. 26, 2009):

Rules Target Genetic Bias
By Steve Vogel

The federal government took a big step yesterday toward implementing a ban on genetic discrimination in hiring and promoting workers, a move that will expand the bounds of anti-discrimination law beyond the traditional realms of age, race, religion, sex and disability.

The new law, which bars discrimination by insurers and employers based on genetic test results, represents the first legislative expansion of employment discrimination law since the 1990 Americans With Disabilities Act.

At a hearing yesterday at its headquarters, the Equal Employment Opportunity Commission presented proposed rules for enforcing the Genetic Information Nondiscrimination Act, signed into law last year after a legislative struggle that lasted more than a decade...

...Andrew J. Imparato, president of the American Association of People With Disabilities, told the commission that the new law must be publicized. "We want to be able to tell people who are thinking about having a test that the results will not be used in a way that harms them in their current job or future jobs," he said...

>>> For the Whole Article

White House Adds Friend of Disability to Policy Staff

From Kareem Dale at the Office of the Press Secretary for the White House (Feb. 26, 2009):

Further demonstrating President Obama's commitment to people with disabilities, it was announced today Jeffrey S. Crowley will be heading up the National AIDS Policy efforts in the Domestic Policy Council (see press release below).  In addition, Jeff and I will be working very closely together on disability policy...

 

This is simply further evidence that President Obama is firmly committed to improving the lives of people with disabilities.  He has now appointed two Special Assistants to the President, one handling personnel and one handling disability policy, and now he has appointed Jeff with his vast knowledge to strengthen the White House's team...

FOR IMMEDIATE RELEASE

February 26, 2009

President Obama Selects Health Policy Expert to Head Office of National AIDS Policy
Jeffrey S. Crowley will join Domestic Policy Council as Top Advisor on HIV/AIDS issues

President Barack Obama today announced the appointment of one of the nation's leading public health policy experts as the Director of Office of National AIDS Policy. Jeffrey S. Crowley, MPH, Senior Research Scholar at Georgetown University's Health Policy Institute will coordinate the federal government's efforts on HIV/AIDS policy and will help guide the administration's development of disability policies.

"Jeffrey Crowley brings the experience and expertise that will help our nation address the ongoing HIV/AIDS crisis and help my administration develop policies that will serve Americans with disabilities," said President Obama.  "In both of these key areas, we continue to face serious challenges and we must take bold steps to meet them.  I look forward to Jeffrey's leadership on these critical issues."

The Office of National AIDS Policy (ONAP) is the White House Office tasked with coordinating the continuing efforts of the government to reduce the number of HIV infections across the United States. The office emphasizes prevention through wide-ranging education initiatives and also helps to coordinate the care and treatment of citizens with HIV/AIDS. The President has made a strong commitment to developing a national AIDS strategy, which will be a top priority for the Office of National AIDS Policy.  In addition, ONAP coordinates with international bodies to ensure that the fight against HIV/AIDS is fully integrated around the world.  The ONAP is part of the Executive Office of the President's Domestic Policy Council (DPC).

Jeffrey S. Crowley's Bio:

Jeffrey S. Crowley, M.P.H., is a Senior Research Scholar at Georgetown University's Health Policy Institute and a Senior Scholar at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. In these roles, he is recognized and respected for his capacity to integrate public health research with political strategy to achieve policy changes.  He has authored numerous reports and policy briefs, and has testified before various Congressional Committees and the Institute of Medicine on several occasions. His primary areas of expertise are Medicaid policy, including Medicaid prescription drug policies; Medicare policy; and consumer education and training.

Crowley previously served as the Deputy Executive Director for Programs at the National Association of People with AIDS (NAPWA).  While at NAPWA, he helped implement several key initiatives including The National HIV Testing Day Campaign and the Ryan White National Youth Conference.

Crowley has spent the last fourteen years working to improve access to health and social services for people living with HIV/AIDS, people with physical and mental disabilities, low-income individuals, and other vulnerable populations.  His writings have been printed in numerous publications and journals.

Crowley received his Master of Public Health from the Johns Hopkins University School of Hygiene and Public Health, and his Bachelor of Arts in Chemistry from Kalamazoo College. He is also an alumnus of the United States Peace Corps, where he served as a Volunteer/High School Science Teacher at the Nsongweni High School in Swaziland.

Stimulus Signed into Law: How did we fare?

From the Disability Policy Collaboration (Feb. 18, 2009):

What is the Status of the Legislation?

Jan 28 - passed by House by a vote of 244-188

Feb 10 - passed by Senate by a vote of 61-37

Feb 11 - the Senate - House Conference Committee resolved the differences between the two bills.

Feb 13 – the House passed the conference bill by a vote of 246-183 and the Senate passed it by a vote of 60-38.

Feb 17 - President Obama signed the bill into law.

What are the Major Disability-related Provisions and their Funding Levels?

The following is a list of disability specific programs and the amount of increased spending they will receive from the time the bill is enacted through 2010:

HEALTH

    * Medicaid: An $87 billion increase in the Federal government's share of Medicaid spending (FMAP) which runs from October 1, 2008 to December 31, 2010. Sixty-five per cent of the funds will be given to all states. Thirty-five per cent will be used for additional payments (in the form of a decrease in a state's match) for states with high unemployment rates. Each state will receive a "base" 6.2% increase.  A state specific analysis can be accessed at http://www.cbpp.org/2-13-09sfp.htm. There is a "maintenance of effort"  requirement which prohibits states from changing eligibility. However there is NO maintenance of effort provision for benefits or services.  Therefore it is critical for affiliates and chapters to meet with their State MR/DD and Medicaid agencies, their Governor's office, and State Legislature immediately to urge them to use this increased funding for disability services. The Act extends a moratoria on Medicaid regulations which are in "final" form (i.e. the school based services/transportation, the targeted case management, and the outpatient rules) from April 1 through  June 30, 2009.  The bill also contains a "Sense of the Congress" that the Secretary of the Department of Health and Human Services shall not publish any pending Medicaid rule (including the rehabilitative services option proposed rule) in final form. COBRA: 65% premium subsidy for 9 months. Health Information Technology: $19 billion to jumpstart computerized health records. Prevention and Wellness: $1 billion to prevent chronic diseases and to increase immunization programs. Lead-Based Paint Removal: $100 million - competitive grants to localities and nonprofits to remove lead paint in low income housing
    * NIH Biomedical Research: $10 billion for increased research.

 EDUCATION

    * Special Education: $11.3 billion for the IDEA State Grant Program and $500 million for the IDEA Part C Early Intervention Program.  $400 million for the pre-school program. 

SOCIAL SECURITY

    * SSI: A one-time emergency payment of $250 to people who receive Supplemental Security Income (SSI), Social Security, disabled veterans, and other selected benefits.  SSA Disability Backlog and Claims: $500 million to help the Social Security Administration reduce the processing time for claims and appeals decisions
    * SSA Modernization: $500 million to replace the antiquated National Computer Center.

EMPLOYMENT

    * Vocational Rehabilitation: $540 million for VR State Grant. Unemployment Insurance: Funding is provided to modernize the unemployment compensation program, to add $25 to the weekly benefit, to continue the current up to 33 weeks of extended benefits through December 31, 2009 and to temporarily suspend federal income tax on the first $2,400 of unemployment benefits per recipient for 2009.
    * Job Training: $500 million for adult, $1.2 billion for youth services.

INDEPENDENT LIVING

    * Centers for Independent Living: $140 million to assist people with disabilities to live in their communities. 

HOUSING

    * Public Housing Capital Fund: $4 billion for building repair and modernization $250 million for a new program to fund energy retrofits of Section 811 Supportive Housing for Persons with Disabilities, Section 202 for the Elderly and Project Based Section 8 units to make them for energy efficient.   HOME Investment Partnerships: $2.25 billion with $2 billion targeted to fill gaps in approved Low Income Housing Tax Credit projects and jump start these stalled projects. Community Development Block Grant: $1 billion to support housing and services to help hard pressed localities. Community Services Block Grant: $1 billion for housing, food, employment and healthcare to serve areas hardest hit by the recession. Low-Income Energy Assistance: Not Funded. Neighborhood Stabilization: $2 billion for communities to purchase and rehabilitate foreclosed, vacant properties to create more affordable housing.
    * Home Weatherization: $5 billion to weatherize homes of low income households to reduce energy costs.

CHILD CARE and HEAD START

    * Child Care Development Block Grant: $2 billion to serve an additional 300,000 children in low income working families. $93.6 million is targeted to improve infant and toddler care.
    * Head Start: $2.1 billion to provide services to 110,000 additional children.

>>>For more information go to the DPC website