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March, 2010
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March 31st, 2010
By CBS News
In a letter Monday to Health and Human Services Secretary Kathleen Sebelius, the industry’s top lobbyist says insurers will accept new regulations to dispel uncertainty over a much publicized guarantee that children with pre-existing medical problems can get coverage starting this year.
The president of America’s Health Insurance Plans said the industry will “fully comply” with the regulations, expected within weeks.
The law was signed last week, but the fine print was not clear on whether kids with health problems were guaranteed coverage starting this year, or if they might have to wait until 2014.
The bill says insurers “may not impose any pre-existing condition exclusion” for children under 19 as of Sept. 23, 2010. Insurance companies say that just means if they choose to cover a child they have to cover the pre-existing condition and its costs, but they don’t actually have to offer new coverage to any child with pre-existing conditions until 2014.
Read more
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March 29th, 2010
By Glenn Graham and Jeff Seidel, The Baltimore Sun
Four years ago, Atholton High’s Tatyana McFadden changed the landscape of high school sports for athletes with disabilities. On Tuesday, the Maryland Public Secondary Schools Athletic Association changed it laws to accommodate those athletes.
New language was added Tuesday to the MPSSAA by-laws, allowing students with disabilities to participate in school sports programs as long as they meet preexisting eligibility requirements, are not ruled to present a risk to themselves or others, and do not change the nature of the game or event. MPSSAA executive director Ned Sparks believes Maryland is the first state to take such action.
In an addendum to the organization’s operational guidelines under the heading “Equal Opportunity for Participation,” the state board also approved guidelines for school systems to develop “corollary athletic programs” that are not subject to MPSSAA by-laws and allow greater flexibility in meeting the athletic needs of students with disabilities.
In 2006, McFadden, a wheelchair athlete, won the right to compete with able-bodied athletes in track meets after she sued the Howard County school system in federal court. In 2008, the General Assembly passed the Fitness and Athletics Equity for Students with Disabilities Act, requiring schools to give students with disabilities the opportunity to compete in interscholastic athletics.
The act required Maryland school systems to design programs to accommodate athletes with disabilities within three years. The State Board of Education finished the job Tuesday, and Sparks said the measures will go into effect in 30 days.
“Part of what we did [Tuesday] was to simply broaden our equal-opportunity provision to say that students can try out and, if selected, participate” in interscholastic athletics, Sparks said. “There’s a caveat that says if their participation would endanger themselves or anyone else or change the nature of the game, then these students can be excluded.
“Part two calls for school systems to establish programs for students with disabilities who cannot necessarily participate in mainstream athletic programs.”
McFadden was born with spina bifida, a condition in which the spinal cord or its coverings are not fully developed. She became a world-class wheelchair athlete, competing around the world and winning two gold medals in track at the Paralympic World Cup in England in 2007. Now a sophomore at Illinois, she competes for the wheelchair basketball and track teams.
McFadden’s courtroom battles while at Atholton brought mainstream attention to the issue of athletes with disabilities competing with their able-bodied counterparts. She eventually competed in track meets, racing by herself and with able-bodied participants.
“It was the whole impetus [that] made us think about it,” said Lauren Young, director of litigation for the Maryland Disability Law Center, which represented McFadden in the 2006 case. Young was also part of a large coalition that drafted the 2008 bill that led to Tuesday’s changes. “It’s what made people think … that we could do better on this issue. It’s what opened people’s eyes.”
McFadden’s exploits on the track also created controversy, however. In May 2006, McFadden’s Atholton teammate Alison Smith saw her victory in the 1,600 meters at the Class 2A state championships taken away when she was disqualified because McFadden was ruled to have been acting as a “pacer” for Smith by rolling in front of her and talking to her.
Then, in May 2008, McFadden and Monica Mason, a runner for Prince George’s County’s Bishop McNamara, collided after a heat of a 200-meter race. Mason suffered bruises and cuts to her legs and missed her conference title meet because of the injuries.
Young viewed Tuesday’s addendum as a victory. “I think it’s going to open it up for more participation for kids with and without disabilities,” she said. “You’re definitely including more kids.”
Attempts to reach McFadden’s family were unsuccessful.
Sparks said the new guidelines were the result of a two-year process with plenty of give-and-take from everyone involved.
“It represents a collaboration of an awful lot of people: school superintendents, advocacy groups and the athletic association,” Sparks said.
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March 24th, 2010
By Allison Archer, KOMU 8
Hundreds of Missourians rallied Tuesday against cuts to disability services and promote equality for Missourians with and without disabilities.
They gathered for the Ninth Annual Disability Rights Legislative Day.
March is developmental disabilities month and Missourians packed the capitol rotunda on Tuesday for the state’s one million people with disabilities. Meanwhile, the state House of Representatives is budget planning this week, which may mean cuts to Missouri’s disability funding. Disability Rights Advocate Max Lewis said $500 million of the disability service budget is up for cuts, an amount he says is much larger than Missourians depending on the services can afford to lose.
“Persons with disabilities right now, they can’t stand any more cuts.” Lewis said. “This is the area that needs the most attention and needs to become more inclusive. If anything it needs to be expanded.”
Marilyn Whittle from Rolla, Missouri has a mental disability and worries budget cuts may mean extra costs she can’t afford.
“I’ve been having a really tough winter because my electric bill has been so high and my rent has been so high and it takes all the money that I have,” Whittle said.
Lewis said the waiting list for developmental disability services is 5,000 Missourians long.
“So many people with disabilities without the help, they wind up in nursing homes and it’s just not what we want. It’s really turning the clock back.” Lewis said. “We’re talking about a basic necessity here of human rights. These people that are waiting to get on the waiting list, think of it as if it were your brother or sister.”
Lewis advocates that people with disabilities talk to their elected officials about the importance of their services. He hopes the large turnout on Tuesday will increase awareness on the rights Missourians with disabilities deserve.
State Senator Wes Shoemyer spoke to the crowd Tuesday in support of equality and increased services for Missourians with disabilities. His daughter’s success in independence amidst dealing with a mental disability inspired him to advocate for other Missourians.
“We in the government should reflect that value, that social compact. That if my neighbor needs some help, especially in the least of us, we’ll never be all that we can be in the state until everyone can be all that they can be.” Shoemyer said. “I’m always proud about making sure that the community-based services are there, that the reimbursement that we need for those services are there, for them to have their boards, their commissions are there.”
No cuts to disability service funding have been decided on yet.
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March 23rd, 2010
By Laura Bruno, DailyRecord.com
Montville High School senior Rusty Van Riper would see the students with disabilities sit together at lunch with their adult aides and after quickly eating, retreat to their self-contained classroom.
Van Riper and some of his friends decided to do something about it. So, every day, a group of general education students visit the self-contained class during lunch and play games with the other teens or take them for a walk in the hallways to mingle with other nondisabled teens.
“We wanted to bring them back into the real world,” said the 18-year-old Van Riper.
Although “inclusion” of children with disabilities in general education classes is the goal of the federal Individual with Disabilities Education Act, students say they often see missed opportunities in both academic and social settings throughout the school day.
Two dozen high school students from Montville, Morris Plains and Cranford are planning a rally this spring to bring attention to how New Jersey public schools can better integrate students with disabilities on a daily basis. Their work has already garnered the attention and respect of officials in the state Education Department. They also have a meeting in May scheduled with Acting Commissioner of Education Bret Schundler.
“I have been struck by how natural it is for them to identify strategies that would increase opportunities for children to interact with their disabled peers,” said Roberta Wohle, director of the state education department’s Office of Special Education Programs.
The students are selling yellow T-shirts that read “Include Me!” for $10 and hope to have 2,500 students in at least Montville and Morris Plains wear them to school on May 21, for a “Paint the Town Yellow” day. They’re also selling the shirts in the community, hoping to have local businesses join in and wear the shirts the same day.
On May 22, the students are also holding a rally during a walkathon to benefit Pathways for Exceptional Children, a Montville-based advocacy group for children with disabilities.
The students currently serve as lead mentors for Pathways. The group is led by Montville mother Melinda Jennis who has worked since 2003 to integrate children with disabilities into their communities. Using children as her main resource, Jennis and Pathways will have trained 8,000 nondisabled children in 40 communities from Bergen to Gloucester counties in how to socialize and communicate with their disabled classmates by the end of this year. They’ve been trained by doing typical activities together, from playing sports to doing art and going to the movies together.
Jeanne Fichera, whose 15-year-old daughter Christine has mosaic Down syndrome, said she is grateful to the Montville students who began visiting her daughter’s class during lunch. Her daughter saw the other students in the hallways at lunchtime but didn’t have the confidence to join them herself. Christine looks forward to her “lunch buddies” and enjoys hanging out with the other students, she said.
“It’s a big deal for her,” Fichera said. “It shows the other kids they can interact with the (students with disabilities), they are human beings, too.”
Despite being in general classes for chorus and keyboarding, most of her classes are self-contained with other children with disabilities, including gym, Fichera said.
“I wish the school would come up with some ideas, why does it have to be the kids,” Fichera said.
The students say inclusion is not that hard to do, but educators often create “forced and contrived” means for meeting the technical language of the federal law. Van Riper said he sees the students with disabilities walk across his gym class to attend gym in a separate area.
“Gym is a class that should be easy enough to do inclusion; it doesn’t make sense to me that they separate us,” Van Riper said.
Students need to learn to work and play together in school in order to help tackle the reality of the adult world — a 70 percent unemployment rate in New Jersey for people with disabilities, said Jennis’ 14-year-old daughter, Stephanie Jennis, a Montville eighth-grader…
Read the rest of the article
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March 18th, 2010
By Racquel Ronzone, The Villanovan
School fights have officially taken on a new meaning.
They have moved from playground disputes among students to courtroom debates involving parents, lawyers, school administrators and the students who are inevitably left as victims.
Prompting the concern and outrage are the practices of aversive shock therapy and seclusion, used as attempts to control and instill desired behavior in students, some of whom are developmentally disabled.
Put aside strong personal feelings about these disciplinary measures for just a second, and the indisputable facts become clear: aversive shock therapy delivers a two-second electric shock to the skin through a device known as a gradual electronic decelerator.
Some individuals wear as many as five electrodes at a time on their arms and legs, receiving shocks whenever authorities believe it necessary.
The United States Justice Department is currently reviewing whether the use of aversive shock therapy by Massachusetts’ Judge Rotenberg Educational Center violates the Americans with Disabilities Act, a move that could mark a major shift in policy.
Seclusion rooms are closet-sized enclosures, some measuring only 4 feet by 3.5 feet across With their usual fixtures of concrete floors and windowless, padded walls, they have earned comparisons to solitary confinement cells.
Although some states — like Michigan, which permits confinement for 15 minutes or less — have strict specifications for the use of these rooms, individuals have reported longer periods of confinement, up to six hours in the case of Caleb Londoff.
The words “emotional damage” barely scratch the surface of what seclusion can do. Isolation for extended periods of time can obviously cause distress, especially in young students who are developmentally disabled and do not completely understand what is happening to them.
The repercussions were more severe for Jonathan King, who attended a public school for students with behavioral problems.
Once in a seclusion room, he hung himself.
He was 13.
The discussion cannot end at that expected refrain of whether aversive shock therapy and seclusion are wrong or why they are wrong, for that matter. Rather than benefitting students, these alleged forms of discipline are harming them, even driving one to commit suicide.
That’s the only reason we need to recognize that these practices are wrong and oppose them.
We can’t, either, end remarking how terrible this is and leaving the issue in the hands of others because — as we tell ourselves — we have no control over what these schools do.
Our very approach and attitude toward this issue has to change in order for these practices to change.
We have to question our awareness of developmental disabilities.
We can attend all of the fundraisers we want. We can pride ourselves on donating a dollar or two to special needs charities at the grocery store register, on adorning our cars with puzzle piece stickers for autism awareness and helping out with local Special Olympics events.
Yet, for all of our showy displays of support, we have lost the scope of the campaign, forgotten the day-to-day struggle for disabled rights and overlooked one of the most basic human rights — education.
We forget the reality that living with and caring for a developmentally disabled person is a life-long task filled with daily battles over things that we so often take for granted — like a meaningful education and a safe, comfortable environment to work for that education.
We belittle people who are developmentally disabled and the challenges they face by using the word “retarded” outside of its proper dictionary definition. Contrary to what you hear, or what you say, it does not mean dumb.
By creating a connotation that makes “retarded” synonymous with “stupidity,” we are, with the utterance of a sentence, denying the personhood, self-awareness and feelings of individuals with developmental disabilities.
Is it not this denial that paved the way for injustices like aversive shock therapy and seclusion to occur in the first place? We don’t admit that shocking inflicts just as much pain on a person who has a developmental disability as it does on a person who does not. We confess that we get claustrophobic in elevators, but we don’t think for a second about the emotional trauma suffered by students forced into seclusion for prolonged periods of time.
The responsibility of banning aversive shock therapy and seclusion is not on your shoulders.
However, you can begin to think and act differently, more considerately, in the hope that a more respectful, life-affirming attitude toward developmental disabilities and the people who have them would prevent the implementation of these two practices, and others like them, in the future.
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March 16th, 2010
Press Release by The Arc
Thank you for your phone calls, emails, letters and visits during the Conference Committee negotiations and throughout the General Assembly session-they really made a difference!
BUDGET UPDATE
The Conference Committee completed their work yesterday and just a few hours after their report was printed, the General Assembly passed Virginia’s 2010-2012 Biennium Budget.
Thanks to your efforts and the likely extension of FMAP*, the budget restores funding for many critical home and community-based services for people with developmental disabilities and their families!
Restorations of home and community based services in the 2010-2012 budget include:
- 250 new ID Waivers for individuals/families on the ID Waiver waiting list (start date of 7/1/10)*
- Elimination of the proposed cut to respite services. *
- Elimination of the proposed cut to HCBS Waiver provider reimbursement rates *
- Elimination of proposed freeze on HCBS Waiver enrollment *
- Elimination of proposed cuts to Medicaid podiatry and optometry services.*
- Monthly income for HCBS Waiver eligibility would not be reduced from 300% SSI to 250% SSI *
- No cuts to consumer directed services
Cuts/Policies that remain in the 2010-2012 VA Budget include:
- $23 million to rebuild a 75-bed institution at Southeastern Virginia Training Center in Chesapeake.
- $24 million to renovate Central Virginia Training Center, an institution in Lynchburg.
- 750 ID Waivers and 134 DD Waivers eliminated (this would make 4 years of no new DD Waivers).
- Assistive Technology (AT) will be reduced from $5,000 to $3,000 per year in FY12.*
- Environmental Modifications (EM) will be reduced from $5,000 to $3,000 per year in FY12.*
*-Restorations dependent on FMAP funding. Like many other items in the budget, these restorations are contingent upon a 6 month extension of the enhanced FMAP (a temporary increase in the federal share of Medicaid spending). On Thursday of last week, the U.S. Senate passed the FMAP extension, which was included in the American Workers, State, and Business Relief Act of 2010 (H.R. 4213), by a vote of 62-36. The U.S. House of Representatives has not yet decided on whether to adopt the Senate bill or develop its own bill, which, after passage would be conferenced with the Senate bill. The Arc will be sure to keep you updated on the status of FMAP, letting you know when action is needed.
What happens next?
The budget bill now goes to Governor McDonnell for his review. The Governor has the ability to propose amendments to the budget before the General Assembly’s veto session on April 21st. Moving forward, it will be important for us to continue asking Governor McDonnell to support “Community for All”. Keep a look out for action alerts from The Arc in the weeks ahead.
What do we do now?
1. Thank your Delegate and Senator.
2. Thank Senators Warner and Webb for their support of the FMAP extension.
3. Stay in touch! The General Assembly session is now officially “over” but the civil rights movement for people with intellectual and developmental disabilities has just begun. Please stay tuned on how you can help The Arc keep this movement going and growing.
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March 12th, 2010
By Susan K. Livio, NJ.com
The Superman and Michael Jackson posters are tacked on Jimmy Lee McCoy’s wall. His bowling ball is in the closet. His stereo and DVD player are plugged in.
All that’s missing from his new home in Port Monmouth is McCoy.
He’s not there because of the trickle-down effect of the Christie administration’s decision last month to cut $550 million from unspent accounts to help close a $1.2 billion budget deficit. The cuts drained $2 million from an account earmarked for the daily living expenses for 15 people with developmental disabilities who have been waiting — some for years — to leave state institutions for a place in a supervised group home.
Now state officials say those moving plans are on hold, at least until the new fiscal year in July. Families are angry, saying the state moved too slowly to get their children out of institutional care before the crisis struck.
“Jimmy’s a mess. He feels like no one wants him,’’ said Madelene McCoy, Jimmy’s guardian since the 28-year-old was 7 years old. “What’s killing me is we have promised this kid the sun, the moon and stars, and the answer always seems to be: ‘Jim can wait’,” she said.
Besides his developmental disability, Jimmy — who needs round-the-clock care — suffers from post traumatic stress disorder from abuse in two group homes, she said. He can be violently self-abusive, swallowing inedible objects when he is frightened. And he’s often frightened living at the North Jersey Developmental Center in Totowa, she said.
On Feb. 23, a state official called to say there was no money to move Jimmy, and his spot would go to someone whose placement was more of an “emergency,” McCoy said. She said the state recently offered to move him to another home as a stopgap.
Sharon Sutton of Lebanon said her 29-year-old daughter, Rachel, was slated to move from the Hunterdon Developmental Center into a group home the week Christie announced the budget cuts. She said the state spent $52,000 to lease the home, make repairs and hire workers. “I find it hard to believe that Governor Christie’s intention was to cut services and deny homes to the most vulnerable members of our society, while increasing costs to the state,’’ she said,
Ed Murray/The Star-LedgerJennifer Velez, Commissioner of the Department of Human Services.Human Services Commissioner Jennifer Velez said cuts had to be made or the state would go broke. Her department lost $71 million and “there was a lot of pain. There were Solomon-like choices all over.”’
The department is trying put some whose moves were put on hold into vacancies at group homes where the rent is already paid, Velez said. One of the 15 moved into a vacancy this week, spokeswoman Pam Ronan said today. Velez said she hopes the new budget to be unveiled Tuesday will provide for families who had to give up placements that took a long time to plan.
Families said they were frustrated with the state’s slow pace long before the recent cuts. The state takes an average of 458 days to complete a community placement, compared with 180 days in other states, said Kim Todd, who heads the New Jersey Association of Community Providers.
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March 11th, 2010
“Shamrockin in Ghent”
Friday, March 12, 2010 ~ 6 – 10pm
Colley Avenue in Ghent ~ FREE
In partnership with BOBFM, Hope House Foundation invites you to celebrate the luck of the Irish at this year’s “Shamrockin in Ghent” formally known as Greening of Ghent on Friday, March 12, 2010 from 6-10 pm, on Colley Avenue in Ghent. The St.Patrick’s Day celebration is free and open to the public.
Keeping the St. Patrick’s Day street party tradition alive, Hope House Foundation in partnership with BOBFM is hosting Shamrockin in Ghent. Tis the luck of the Irish we’ll be sharin’ on Colley Avenue as we welcome all our neighbors to the party of the year, that has been a long standing tradition for the community.
Come out and enjoy live music from The Deloreans. Also, watch the Tidewater Pipe and Drums kick off the festivities. The celebration continues into the “wee” hours of the night at Ghent’s popular restaurants and nightspots.
All proceeds benefit Hope House Foundation a local non-profit organization providing independent living services to adults with developmental disabilities in Hampton Roads. We encourage you to help us continue this annual St. Patty’s Day tradition and come out and enjoy the sounds and festivities and help us “paint Ghent green!”
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March 10th, 2010
Become a more knowledgeable and effective advocate for yourself, your child, and others!
Are you an adult with a developmental disability or the parent of a young child with disabilities? Do you want to be a more knowledge and effective advocate for your own or your child’s rights? Do you want to join a statewide corps of Virginians active in public discussions of policies and practices affecting people with disabilities?
Partners in Policymaking are a diverse group of highly motivated individuals selected to participate in eight two-day sessions in Richmond between September and May. These sessions led by state and national experts prepare them to use the power of advocacy to change the way that they, their families, and others with disabilities are understood, supported, taught, live, work, and play in their communities. Their training covers the history of the disability rights movement, self-advocacy, independent living, supported employment, building inclusive communities, natural supports, legislative advocacy, assistive technology, communications, and team building.
The Board pays all expenses for training, lodging, meals, and travel. It also works with participating self-advocates to arrange personal care support services and with parents to arrange respite care. Participants, in return, must agree to complete all homework and class assignments as well as one major project that demonstrates their new competencies.
To be considered for the Partners in Policymaking Class of 2011, applications must be received by no later than April 30, 2010.
For more information, to download an application, or to apply online, visit www.VABoard.org/policymaking.htm. You can also e-mail Erin.Hickey@VBPD.virginia.gov or Teri.Barker@VBPD.virginia.gov or call 1-800-846-4464 with questions or to request an application.
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March 9th, 2010
By Courtney Trenwith, Brisbane Times
The parents of a severely disabled Queensland girl have won a court case to have her sterilised.
The 11-year-old, known as Angela, cannot communicate and ”acts as a three-month-old baby would”.
Her parents sought permission from the Family Court for doctors to perform an irreversible hysterectomy to stop Angela’s menstrual cycle, which is believed to cause epileptic seizures.
Disability groups have described the decision as an abuse of human rights and a disability researcher said it was ”a quick fix” for a couple struggling to cope with the responsibilities of looking after their disabled child.
University of NSW disability scholar Dr Leanne Dowse told ABC Radio the ”unusual” court ruling was the first in many years to side with parents seeking an invasive, irreversible medical procedure for their disabled child.
Beyond raising the issue of who had the right to make a decision for a disabled child, the case highlighted an increasing lack of services for carers of people with a disability, Dr Dowse said.
She said that since the 1980s, governments had progressively reduced residential services without improving other community support, which had placed increased strain on families.
”It means that something like menstruation for a family is just one more problem issue that they have to deal with in this massive set of unmet needs,” Dr Dowse said.
”Decisions like [Angela's] have to be seen in that context; it’s often for people who are at their wits end already.
”It’s been a very difficult decision and I’m sure that nobody would take it lightly but … it’s important to understand that those people are trying to make that decision in the context that their services [and] support needs are not being met. We see this increasingly in disability where there’s an enormous amount of unmet need.
”The issue is that it’s probably a quick fix but it really is one of those things that probably almost definitely covering up a whole range of other issues.”
Family Court Justice Cronin said the decision would improve Angela’s life.
Angela’s mother told the court her daughter had had irregular menstrual periods since she was nine years old and they caused pain and fatigue.
Other medications had not worked and three doctors conferred that a hysterectomy was the best solution.
However, Queensland Health would not approve the procedure without a court order, which was granted on February 16.
The court heard Angela cannot communicate or control her movements and relies on her parents to be fed, transported and washed. She has no control over her bladder and wears a nappy.
Angela’s doctor told the court her patient’s excessive bleeding caused her to be anaemic and Angela would never have the psychological capabilities to consider pregnancy in the future.
A pediatrician said pregnancy would be ”disastrous for Angela.
The Director General of the Department of Communities was legally represented during the proceedings but did not support or oppose the application.
