Rosa's law passes House

Last evening, the House of Representatives passed Rosa's Law.

Under the bill, the terms “mental retardation” and “mentally retarded” would be stripped from federal health, education and labor policy. “Intellectual disability” and “individual with an intellectual disability” would be inserted in their place.

The bill now goes to the President to sign.

Autism bill signed into law in NJ

A new law amends NJ's existing discrimination law to recognize autism disorders, thanks to the efforts of lawmakers, including Senators Kean and Vitale, who were the prime co-sponsors.

Autistic residents will now receive the same protections as other disabled citizens from discrimination in access to housing, employment and public accommodations such as theaters, stores and restaurants,” Senator Kean said.

Gov. Corzine signs bill expanding coverage for autism, developmental disability therapies

N.J. Governor Jon Corzine signed a bill "requiring insurance companies to cover the screening and therapeutic treatment for children up to age 21 who are diagnosed with autism and other developmental disabilities."

"There is no justification, no rationalization, that makes it possible to turn our backs on people who have so much love in their hearts for their children,'' Corzine told a packed room of teary-eyed families, lawmakers and hospitals officials at the PSE&G Children's Specialized Hospital in New Brunswick. via nj.com

The bill also makes financial sense, says Joseph Roberts (D-Camden) since many toddlers are able to "bypass some special education programs" with such services.

Obama signs the Christopher and Dana Reeve Paralysis Act

A new law signed today will "coordinate research on paralysis and rehabilitation", according to USA Today.

The Reeve measure is intended to improve coordination of research and treatment for paralyzed persons and others with disabilities. The late Christopher Reeve became an advocate for embryonic stem-cell research after he was paralyzed in a 1995 horseback riding accident in Virginia. Reeve died in 2004 of heart failure.

Obama said the new law "will connect the best minds and best practices from the best labs in the country and focus their endeavors through collaborative scientific research into the cure for paralysis, saving effort, money and, most importantly, time."

The law designates the National Institutes of Health to coordinate research and work with other agencies and private groups to enhance paralysis research, rehabilitation and treatment programs.

Thanks, Shakesville

Thanks to my friends over at Shakesville for their support of the Community Choice Act and their action after reading my guest post.

Here's a link to an audio of Sen. Tom Harkin reintroducing the bill yesterday.

Why we need the Community Choice Act

In my post yesterday, I wrote about the reintroduction today of the Community Choice Act and linked to testimony by people with disabilities who were put in nursing homes. Reading their stories is chilling to anyone who values their freedom and autonomy. The waste of human potential when people are forced into institutions is, as the UCCB wrote in their letter supporting this bill, against our Catholic beliefs.

But the question may remain for some - - what does community care do for a person with a disability? I live independently with the help of an aide forty hours a week. Some people think that having an aide is no different than having a maid - or is something that can be replaced by other services. This isn't true and is why people have wound up in nursing homes when they can't get funding for an aide in their home.

The reality is that aides provide help that fills in the cracks so a person with a disability can remain living at home. They don't just prepare food, they also feed you if you need that. They help you dress and shower. Aides empty catheter bags, they help with using a lift, they help with transfers, and they sit patiently and turn pages so you can read your mail. They dial phones, open mail, pay bills, run errands, shop, help you get to the doctor and show up at midnight if you have a flood from a plumbing issue. They fill wheelchair tires with air and cut up food.

And their help not only keeps people in their home, it keeps them working and paying taxes. The cost of in home help is cheaper than institutionalized care. It is more flexible and tailored, through a plan of service, to the needs of the person so that costs are kept down. Other available services are used, when possible, along with the services of the aide. There may be volunteers or programs that deliver meals. In the long run, keeping people with disabilities in the community simply costs much less and promotes the dignity and well being of the person.

It's a win-win.

The Community Choice Act will also help families with children with disabilities and seniors. This is a bill that promotes our belief in the inherent dignity and worth of every person and their value to their families and communities. It can end shutting the door on lives, premature deaths and the heartbreak of exclusionary treatment through forced institutionalization. And, in addition to all of that, it provides alternatives to the expensive institutionalized care now thrust upon people.

The only reason I can work and be productive is because of the community care I've received. I know many people with disabilities who were institutionalized and came back as much different people and some who gave up and died in nursing homes at young ages. I've seen mothers and fathers have to put their child with a disability in a nursing home because they couldn't get aides. The heartbreak of these situations can't be described, but needs to be stopped.

As someone who's been blessed and fortunate to stay in the community, I ask you to take the time to read about this bill in my post and support it by writing your representatives in Washington DC and asking them to co-sponsor and support this bill.

Community Choice Act reintroduced tomorrow

The Community Choice Act will be reintroduced tomorrow in Congress. It provides alternatives to nursing homes and other institutions for those with disabilities, offering a solution to our present system.

Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc. via adapt.org/casaintr.htm

ADAPT points out that this bill doesn't create a new entitlement, but allows flexibility for alternative care. Community services cost less than institutional care and this bill would allow us to explore more cost efficient ways of care. Community care allows recipients to remain working and in the community.

The Justice for All blog notes that the CCA is being reintroduced right before the 10 year anniversary of State v. Olmstead, which held that forced institutionalization is discrimination.

Related:

National Report from 2006 Hearing on ending the institutional bias (includes testimony from people with disabilities who have been instutionalized)

Letter in Support of Community Choice Act from United States Conference of Catholic Bishops, dated June 5, 2007 (pdf file) which reads in part:
"In recent decades, our Church has come to a greater understanding of the needs of our brothers and sisters with disabilities. In 1978, the bishops issued their Pastoral Statement on People with Disabilities. In that statement, the bishops called upon all people of good will to work with people with disabilities to improve their living conditions and ensure that each individual is able to achieve the fullest measure of personal development of which he or she is capable. It is in that spirit that we are pleased to support the Community Choice Act. With the services that the bill would make available, more people with disabilities will be able to move from institutional care to lives of independence in their communities."

Nick's blog post about the importance of the CCA, which asks:

Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?

Waiting

Serve America Act

The Serve America Act, sponsored by Senators Ted Kennedy and Orrin Hatch "would increase opportunities for community service in a variety of ways from offering tax incentives for employers who allow workers to take time off for service to setting up funds to help non-profit groups recruit more volunteers." A Senate committee will hold a hearing Tuesday on this bill.

USA Today reports that applications are rising for government service programs. At AmeriCorps, online applications are up from 3,159 last February to 9,731 this year, attributed in part by the economy and the president's call to service. At the Peace Corps, applications are up 16%.

Budget director Peter Hatch was quoted in the article as saying that community volunteers doing more will mean government will "have to do less to provide for those in need".

The blog New Service has been tracking the bill and links to the Times piece by the senators entitled 21 Ways to Serve America.

Related : National Service Inclusion Project (provides training and technical assistance to include people with disabilities as participants in national service programs. Online requests can be submitted at the link.)

ABLE Act of 2009

A bill for tax-free savings accounts for people with disabilities has been proposed in Congress.

The bill sponsored by Sen. Robert Casey, D-Penn., and Rep. Ander Crenshaw, R-Fla., would allow trusts to be created to pay for disability related expenses such as education, housing, health care and personal support services. The funds in the trust would not count against the individual’s maximum asset amounts to qualify for Medicaid and other government programs.

Called the Achieving a Better Life Experience Act of 2009 or the ABLE Act of 2009, the bill would create accounts similar to the 529 plans that currently exist to save for college. Up to $500,000 could be invested in the accounts, which would be tax-free in many cases. via disabilityscoop.com

More specifics of tax consequences and how it can be set up, if passed, are explained here, in the last two paragraphs.

Job's Comforters and the Economy

A lot of people believe that stress is always a bad thing. With so many people unemployed, there are articles and seminars talking about how to deal with stress. This article talks about how stress can sometimes be a good thing. It can energize us, mobilize us and teach us resiliency at times.

I was thinking about stress the other day when an unemployed friend of mine who thought she would get help with her COBRA payment found out she did not fall within the designated group because, apparently, she was laid off too soon. She told me how she finally wrote her congressman when she discovered this because, actually, she has been struggling even longer to make ends meet and find a job. Her response to the stress of having her hope dashed that she would get some help with the enormous cost of paying COBRA was to mobilize.

Now those who like to play the role of Job's comforters would most likely tell her and people like her that the stimulus package can't cover everyone. Maybe they would go so far as to tell her that she has had more time to find a job - never mind that it was during one of the worst economic periods of our country during which every week more people were being laid off.

What these folks fail to see is that my friend isn't looking for a handout. What my friend really wants is a job. She has worked since college and has never been laid off before. She is in a field that has been devastated by the current economic crisis, so she's realistic and has told interviewers that she will take less pay by half and work at jobs she had a decade ago. My friend uses a wheelchair and has had to make special arrangements for interviews scheduled in buildings that lack access. She's tried headhunters, temp agencies - you name it.

I know what it's like to deal with Job's comforters. Those who are Job's comforters often fail to see that bad things could happen to them. They cling, even in the face of contrary evidence, to the Just World theory where, if a person does everything right, everything will go right. And if it doesn't, they point to the person and finger wag.

I tell my friend that I'm proud of her for continuing to mobilize in reaction to stress, for speaking up about how the stimulus package affects real people who are part of the unemployment crisis.

Emergency Economic Stabilization Act of 2008

...a copy of the draft of the bail out bill can be found here.

A breakdown of the bill via MSNBC

If you don't have TV, you can watch the House of Representatives debate on cspan online tomorrow. 3 hours of debate with no amendments allowed.

C Span also provides Senate coverage, which will occur possibly later this week.

Congress backing parity bill

The NY Times reports that

Congress on Tuesday moved close to final approval of a bill that would require group health insurance plans to provide more generous coverage for treatment of mental illnesses, comparable to what they already provide for physical illnesses.
....
The House, by a vote of 376 to 47, passed the mental health measure as a free-standing bill. The two chambers agree on the substance of the legislation, which requires equivalence, or parity, in the coverage of mental and physical ailments. Federal law now allows insurers to discriminate, and many do so, by setting higher co-payments or stricter limits on mental health benefits.

President Bush, business groups, insurance companies and mental health advocates all support the measure.

Although the House and the Senate are using different vehicles for the legislation, supporters said that a single mental health bill would soon emerge from Congress and go to Mr. Bush for his signature.

You can read the rest of the article here.

**

In other news, veterans gain US benefits for Lou Gehrig's disesase and the VA will increase benefits for mild brain trauma.

Up to 320,000 troops who served in Iraq and Afghanistan suffered traumatic brain injury, a RAND Corp. study estimated this year. The vast majority of the cases are mild and came from exposure to an explosion, often from a roadside bomb. Most veterans with mild cases recover, Pamperin said, but some are left with permanent problems.

Compensation could reach $600 a month, the VA said. Currently, veterans with symptoms such as headaches, dizziness, sensitivity to light, ringing in the ears and irritability and insomnia collect $117. via usatoday.com

and the third report on Medicare fraud and billing is in, this time including stories of prescribing durable medical equipment for those with bubonic plague. Guess they need a wheelchair more than those of us who can't walk....

Who is a DSP?

They are home caregivers. And they are pushing for action on the following bill to allow them to provide consistent, professional care.

H.R.1279
Title: To amend title XIX of the Social Security Act to provide funds to States to enable them to increase the wages paid to targeted direct support professionals in providing services to individuals with disabilities under the Medicaid Program.

Currently, DSPs working in private practice make an average of $8.68 per hour for work that is emotionally and physically exhausting. Nineteen percent of all DSPs live in poverty and 25% are without their own healthcare. Turnover is high, and the resulting lack of continuity in care can be demoralizing for or even harmful to people with disabilities.

"We've seen what happens when our clients don't get consistent care," Andrea McMurray, a caregiver from Lawrence, Kansas, told those attending the rally. "We've seen them turn inward, stop trusting the people who are supposed to help them. But when they can depend on a staff member to be there... it's amazing what they can do."

via directsupportprofessionals.blogspot.com

There is a crisis facing the support services industry, one that needs to be addressed. The video below encourages us to talk to others about what a DSP is, how little they get paid and what's at stake.

For more information about HR 1279, click here.

The Senate Passes the ADA Amendments Act of 2008 on a voice vote

The Senate on Thursday approved major legislation that would expand protection against workplace discrimination for people with disabilities and overturn several Supreme Court rulings that curbed such safeguards in the past decade.

The measure, passed on a voice vote and without dissent, is similar to a legislation that sailed through the House of Representatives in June, 402-17.

Minor differences between the two bills are expected to be quickly resolved so that a final version can be sent to President George W. Bush to sign into law. It would expand the 1990 Americans with Disabilities Act, which was signed by Bush's father, President George Bush.

"This is the most important piece of disability legislation since the enactment of the ADA in 1990 and we are close enough to the finish line that we can see over," said Andrew Imparato, head of the American Association of People with Disabilities via news.yahoo.com

The rest of the article can be read here.

New to the blogroll: The Catholic Down Syndrome Society

I'm adding a blog to my blogroll which contains resources and information: The Catholic Down Syndrome Society.

I'd also like to point out the recent article by the blog's author, Leticia Velasquez, entitled Down Not Out, appearing in the National Catholic Register, which discusses, in part, the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

Defeated in 2005, the bill was reintroduced in 2007 by Sens. Brownback, of Kansas, and [Ted] Kennedy, of Massachusetts. It would provide expectant parents up-to-date, scientifically sound information on the medical treatment available to individuals with Down syndrome, access to support groups for parents and a list of potential adoptive parents.

The bill is awaiting debate in the House, after which there is a good chance it will pass and be signed by President Bush.

via National Catholic Register

The right to offend - uniquely American?

In a series of NY Times articles about how the American legal system is unique compared to other countries', our First Amendment right which allows free speech, including speech that offends, is discussed. As the article explains, it is "uniquely American" to allow such freedom of speech, as long as it falls short of the imminent (unlawful action) requirement, not only in conversations but in magazines and newspapers.

The laws reflect our culture, however, and in 2008 there are some who are calling out for limits against free speech. Some say that the time has come to rein in the speech of those who insult other groups or who print offensive material under the rubric of free speech.

This raises an interesting question since at debates I've attended about free speech, I've learned that opinions vary, depending on the facts and hypotheticals given. For example, if you gave a hypothetical involving offensive speech toward Group A to members of Group A, they might very well agree that such speech should be banned. But if you change that hypothetical to something members of Group A routinely write or say about members of Group B, Group A realizes the profound effect that limiting free speech would have in their public discourse. This affects religious groups in a myriad of ways. (Although we can debate whether it would be a more civilized society, as some might say, I can't help but recall the silent streets of those countries where government not only silences speech, but regulates movement of its citizens to the point that they require a permit to leave their own town, such as in North Korea.)

Studying the way other countries govern is a good starting point when considering a change to our constitution. Countries whose government may be seen at the other end of the spectrum from a democracy are definitely worth learning about. Why? Because even in democracies, it's easy for government to enact changes that can erode the rights of people. And one of the ways that can be done, other than through legislation, is through court decisions, some of which deal with interpreting our rights under the constitution.

This may seem off topic for my blog, but it's not. Those who are interested in disability advocacy and inclusion would benefit from reading about legislative changes and court decisions that affect laws like the Americans with Disabilities Act. It is also important to realize the effect that changing constitutional laws such as the First Amendment would have in our everyday lives, even for those of us who blog about religion. We have to think through many hypothetical situations, inserting fact after fact, before we should be willing to relinquish any of our rights or even back new legislation.

It's easy to take for granted our right to speak out and speak up and even though it can be discouraging to feel as if we're not heard, it's important to remember that we're light years ahead of countries where what we say could be judged as offensive - and banned.

And so it goes...

State TV in Russia. The comments vary from praise to ones calling Russian tv "zombie tv" at a site asking for feedback from Russians about tv that bars Putin opposers. I don't care, one says, I live better now. Another says that the media is all controlled.

As a person with a disability, I've been struck at the utter lack of coverage of disability issues during the many hours of coverage on the 24/7 news stations. So called experts get on and talk for hours about the reality of our political system as of that day - but the content isn't geared toward information. Shouldn't we be voting based on candidates' platforms? Shouldn't we be able to choose the content more?

Am I comparing our system to one where Putin supporters disappear from the air? No, of course not. At least not literally.

But then, on the other hand, doesn't our media with its pundits resemble zombie tv in many ways? Think of the repeated messages, images and the fact that content is chosen by the powers that be. Content driven by viewers? I suppose one could argue that because of advertising, it is to some extent. But if we live in a place that's so free, then why isn't the political coverage more diverse? Why is there only partial coverage of the candidates' talks and, for the most part, short clips like 'bloopers' of apologies, speculative comments, etc.? I know what they say: people want this content, they want to be entertained or they won't watch.

So we're being sold a package, like news to go. One package du jour.

It's the internet, however, that's become more of a voice for the people, with diverse voices speaking up and information available on issues that matter to you as a voter. And, perhaps, in that vein, we can see television as having become somewhat censored in our country, simply because its control is held in the hands of a few driven by economic factors- and freedom about choice of content is incomparable on the web compared to tv which has become predictably - well- zombie-like.

I know Americans are too smart to fall for all of this. But today, of all days, it needs to be said: if we forget that when we watch tv, we're being sold a product and let media control the outcome of elections, then there are a lot more similarities to concepts like state TV than we may want to acknowledge.

And now down to brass tacks for a blog about disability issues. Has there been one day, during all the time that I've seen coverage for these primaries, that deals with disability platforms and issues? No. And I can't be the only one watching who feels this way. What issues are important to you? Have you ever sat and watched this coverage and then gone out to your car and seen the gauge close to empty and sighed because you know what it's going to cost you to fill it?

Yes, we have a lot at stake in this election. I don't want to be sold a package by the media. I want to hear about issues that affect my life. I want to hear about current legislative efforts toward making independent living more possible for disabled people, about efforts toward curbing the price of medical equipment, about better housing and transportation. How many links to disability topics do I have to tv shows? Very few. And for those about legislation or politics, I can't think of any off hand.

And yet how many voters have disabilities, have loved ones or friends with disabilities? Many. Would you like to know about Senator Kennedy's proposed legislation that would help disabled people live better- carefully drafted legislation that would help us afford what we need to work and live with the extraordinary expenses that disability incurs? Check out my legislation tag below, but don't expect coverage of these issues on tv. Don't expect to see a panel discussion or clips from interviews of anyone on the topic on CNN, FoxNews, MSNBC, ABC, CBS or NBC- although I'd welcome it. And don't expect the candidates to talk about topics like this because they know what's appearing on tv, they know what clips will get put on to give them coverage, their people know what the media is selling too and what issues to give attention to.

So why am I writing about state tv this week? Oh, I don't know. I do know, however, that we have alternatives, if we choose to support them, like [with]tv.

My Senator and Me

Yesterday I watched Sen Kennedy on the news as his two dogs greeted him when he left the hospital and also saw news clips of him out walking the dogs at his Cape Cod home. (If you'd like to send best wishes online to him, you can do so here.)

What I didn't know is that his Portuguese water dogs, Sunny and Splash, have their own career. They helped the senator write a children's book. It's called My Senator and Me, a "dog's eye view of Washington DC" and is available on amazon. According to reviews, it's a good introduction to teach children about how a bill becomes a law. According to this interview that includes a reading from the book by the Senator, Splash took over during the publicity tour. And it sounds like he can do that from time to time at the Senate too.

Is there anywhere Splash can't go?
The Senate floor. He is a little upset about it. [He opens a copy of the book.] "I know the rules, no dogs allowed on the Senate floor. But I don't like it. I see plenty of senators, and they don't behave any better than I do."
...

Doesn't he get to be something of a distraction?
Not really. [Splash barks and tries to retrieve a tennis ball from under the couch.] But one time [during a committee hearing] we had a roll call, and when we came back, Splash was sitting in the chairman's chair.

How does he behave around other senators?
One time, the caucus went on too long, and Joe Biden and Paul Wellstone were speaking louder and louder. Splash started to bark, so Paul Sarbanes made him an honorary member of our caucus. via Boston.com

[image description: Book cover shown. At the top is the book title My Senator and me with the Capitol shown underneath. An image of Senator Kennedy is at the right and in the forefront is a black shaggy dog with his tongue hanging out happily. At the bottom is the name of the author, the senator.]

Genetic discrimination law passed in Senate

After passing by a vote of 95-0, the bill will now go to the House.

The legislation would safeguard genetic information to be kept private between doctor and patient and would prohibit discrimination by employers and insurance companies, among others. It is being hailed by Sen. Ted Kennedy as the first new civil rights bill of the century, noting that discrimination based on a person's genetic makeup is just as wrong as discrimination due to race or religion.

Until recently, genetic tests were used mainly for rare conditions that could have catastrophic health consequences. But there are currently more than 1,200 diseases for which predictive clinical tests are available -- including breast cancer, Alzheimer's and a particularly aggressive type of colon cancer. More tests are in development for conditions such as diabetes.

"We're not talking about rare genetic disorders anymore; we are talking about very common traits," said geneticist Joann Boughman, executive vice president of the American Society of Human Genetics. "We are to the point where we can begin testing people so they can make much better plans to avoid getting sick in the first place."
via latimes.com

Equal opportunities in school sports, physical education in Maryland

Saw this on Patricia Bauer's blog a few moments ago and since it's a followup on a story I covered here, I'm going to blog about it, with due credit to her. Thanks, Patricia!

Good news out of Maryland - the General Assembly has passed a bill giving disabled athletes equal access to school sports and physical education. Tatyana McFadden, the Paralympic athlete who sued the school to compete on their track team, was behind the legislation.

The Maryland General Assembly passed a bill Monday night that will require county boards of education to allow students with disabilities to have equal opportunities to participate in physical education programs and on mainstream athletic teams.

The Fitness and Athletics Equity for Students with Disabilities Act came about in part because of Tatyana McFadden, 18, a wheelchair athlete from Atholton High in Howard County. During her high school track career McFadden has fought, twice in court, for inclusion in races and for the right to have wheelchair races count in the team standings.
via washingtonpost.com

The bill will go into effect on July 1 and school districts will have 3 years to implement the changes.




h/t Patricia Bauer