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Partners in Policymaking: Apply now for the class of 2011

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.

Queensland partents sterilize disabled daughter

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.

South Carolina slashes funding to disability services

March 8th, 2010

By Jim Davenport (AP)

COLUMBIA, S.C. — Lawmakers are considering cutting all services for nearly 26,000 people with disabilities as South Carolina tries to plug a $560 million budget hole.

Parents say the proposed cuts to day care programs and other services would force them to give up much-needed jobs to stay home and care for their young and adult children.

Andrew J. Imparato, chief executive of the American Association of People with Disabilities, said he is hearing horror stories about budget cuts around the country, but South Carolina is the most extreme example. Shutting down everything but federally required residential care is “the most draconian kind of thing I’ve heard,” he said.

Lawmakers say they have little choice. They are trying to close a shortfall in next year’s budget in a heavily Republican state where tax increases are not considered a viable option.

Mary Bennett, a single mother of three, said the budget cuts would mean sending her 11-year-old autistic son to an institution or giving up her job at a Columbia program that helps parents like her. Her son goes to public school a few days a week and a state-funded program cares for him the other days.

“He’s completely dependent on other people. He can’t do anything himself,” said Bennett, 47. “I wouldn’t be able to work if they cut his services.”

The budget approved by a House committee last week would provide services only for 4,800 people with disabilities living in group homes or institutions, the only type of care the federal government requires the state to provide.

Theoretically, others who need help could move to those facilities, but there are only two open slots in the entire system and those are reserved for those in most dire need.

More than half of the proposed cuts in the current version of next year’s $5 billion budget — about $113 million in all — affect Medicaid and other human services programs. The Department of Disabilities and Special Needs would see its funding slashed by $42 million, or 28 percent.

House Ways and Means Committee Chairman Dan Cooper, a Piedmont Republican, said he’s trying to find a way to soften the cuts, but there’s simply not enough money in other agency budgets to readily make up the difference.

House Minority Leader Harry Ott, a St. Matthews Democrat, railed against the proposed cuts, but doesn’t believe they’re being used as bargaining chips to free up money elsewhere in the budget. They “just misread their numbers in their haste to get the budget out,” Ott said. “They just kept cutting and nobody really looked at the ramifications of what those cuts meant.”

Other states have raised taxes to deal with similar problems, but that’s unlikely in South Carolina.

“There’s just not a willingness to raise taxes in a Republican House,” Cooper said.

On Wednesday, activists and people with disabilities packed the Statehouse lobby to ask legislators not to cut their programs. Disabilities Advocacy Day is an annual event, but has more urgency this year.

State Rep. Lanny Littlejohn, R-Spartanburg, was on the House floor reading letters from disabled people who would lose adult day care and work programs.

“We are the only the ones that can help these people and it’s our responsibility to do that,” he said.

Advocates say the cuts will make it tougher for people to survive or thrive: No more door-widening or ramps for people using wheelchairs; parents caring for adult children with disabilities would lose day care programs where they learn basic skills and earn a little money; 48 percent of the state’s Medicaid recipients would lose prescription coverage as the state imposes a three-drug cap instead of the current maximum of 10.

“We just by necessity have to cut that optional stuff,” Cooper said.

Other states, like Oklahoma and California, are also cutting services for people with disabilities, but the changes are minor in comparison. Advocates say the South Carolina cuts are shortsighted because they eliminate early-intervention programs that could help prevent more expensive problems down the road.

In Aiken County, Board of Disabilities Executive Director Ralph Courtney says budget cuts in the current fiscal year already have forced him to shut down programs that offer in-home help for parents of children ages 3 to 5 who have disabilities including autism or at risk of developing them. The need for help is “generally decreased if you get to them soon enough,” Courtney said.

The state Department of Disabilities and Special Needs estimates that at $9,000 to $13,000 a year, providing in-home services for people with disabilities is less expensive than sending them to an institution or group home, where full-time care costs between $28,500 and $114,000 annually.

Shelia Dull, 46, said that under the proposed budget she would lose day care services for her 24-year-old daughter in Dorchester County that allow her to work a couple of days a week, as well as catheters and other supplies. Her daughter has spina bifida and uses a wheelchair.

“I can’t leave her alone for eight hours by herself,” Dull said. “What happens if she fell in the bathroom? Who would help her?”

Carolyn Myers, an advocate for people with disabilities, said people often believe parents have the sole obligation to provide care. She said many don’t understand how physically demanding it is to care for a child who is older than 13 or an adult.

“You’re talking about someone who has to have a lifetime of this kind of care,” she said. “It’s not like you can go out and hire the neighborhood teenage baby sitter to come in and do the job, either.”

Take action: stand up for the rights of people with disabilities

March 3rd, 2010

Press Release written by The Arc

On February 25^th, the House and Senate passed their respective budget bills. The two bills take very different approaches on a number of issues. While the House and Senate budgets did not include everything advocates want, there are restorations to community services in each bill.  For a summary of how the House and Senate versions of the budget affect people with ID/DD  and their families, click here.

What happens now?

The two budget bills now go to Conference Committee.  The committee, composed of 6 Delegates and 6 Senators, will negotiate a compromise for the state budget and then send it over to Governor McDonnell for his action.   The committee is required to complete its work by March 13th.   Members are expected to only discuss areas where the two budgets differ.  Therefore, the most important thing we can do at this point in the process is advocate for the “best” parts of each bill, seeking to ensure that they are all included in the final budget.

How Can You Help?

1.  Look out for action alerts from The Arc this week.

The Arc will be sending two action alerts this week.  One alert will be focused on Senate committee members, the other alert will focus on House committee members. Each alert will include a simple, key message for you to share with the members when you call them.

2.  Help us continue to make the civil rights movement  a “public”  issue.

We have seen a lot of articles, letters to the editor, and editorials/op-eds in the past week related to ID/DD services.  We need to keep this momentum going in order for these issues to stay in the “public” eye.  Help us get the word out!  Please send a letter to the editor of your local newspaper in support of “Community for All”.  Consider calling your local newspaper/TV station-ask them to do a story on the proposed policies affecting people with ID/DD (feel free to connect them with The Arc of VA office for more info).   Note: You do not need to be directly affected to speak out.  Letters to the editor from “taxpayers”/concerned citizens are encouraged as well! Click here for tips on writing a letter to the editor.

Looking Ahead

The budget crisis, as unpleasant as it is, has made us stronger as a grassroots network. We’ve come together in record numbers, speaking out with a strong, collective voice.   It will be important for us to stick together to ensure that the civil rights movement for people with ID/DD continues to move forward.  There is still work to be done about the cuts/policies that were not addressed in either budget bill (ie cuts taking effect in FY12, elimination of waiting lists and institution reform). The Arc will continue to advocate about these issues-but we need you to stay involved . Find out how you can help- click here to contact to your local chapter and stay tuned for updates from The Arc of Virginia after the conclusion of General Assembly session.

Judge orders NYC to move mentally ill out of institutional housing

March 2nd, 2010

Arc President to Gov: Rethink institutional focus

March 1st, 2010

Op-ed written by Howard Cullum, President of The Arc

Our Virginia state government is facing its biggest fiscal crisis since the Great Depression. The economic downturn and the loss of millions of American jobs has dramatically reduced tax revenues that pay for basic government services at all levels — federal, state and local.

Our state and local governments can’t print or borrow money to solve the problem. State and local budgets must be balanced. The governor and General Assembly members have the responsibility to adopt a balanced 2010-12 budget.

While the budget cuts will be challenging, our elected officials need to look beyond short-term 2010-12 budget decisions. There are clear opportunities to reform and remake state-funded services for the future.

The Arc of Virginia has been working hard over the past year to have the state step back and reconsider its 2009 decision session to rebuild a 75-bed training center for persons with intellectual disabilities at the Southeastern Virginia Training Center (SEVTC) in Chesapeake. The decision to rebuild 75 beds was made after then-Gov. Tim Kaine had recommended closing SEVTC by June 30, 2009, as part of his budget recommendations. In addition to the rebuild on the current campus, the General Assembly for the first time ever authorized state bonds to finance 90 community beds in the Tidewater and Peninsula communities for persons leaving SEVTC.

Subsequent to the rebuild decision, a state-funded review of SEVTC residents by a nationally recognized firm concluded that all current SEVTC residents could be served in community homes. The Arc spent the rest of 2009 meeting with Kaine’s Cabinet officials and agency leadership to obtain a deferral of the rebuild until the General Assembly could reassess this issue at the 2010 session.

The Arc’s efforts to defer the SEVTC institution rebuild were not successful. Our Arc families were shocked by the state’s decision because all of the residents can live in the community and because of the financial cost.

The institution rebuild will cost $23 million for 75 beds or $306,000 per person to build a house on the campus. Are there no homes available in Tidewater for less than $1.5 million? Meanwhile, the state is funding the building of 90 community beds for $8.4 million or $93,000 of state funds per person.

The Arc of Virginia has been on record opposing the SEVTC facility rebuild because it continues and reinforces the stereotype that there are some people with intellectual disabilities who can only be served in institutions. This is simply not true. There is no special class of persons who cannot be served in the community.

No other state is going down this rebuild road. In fact, 11 states have closed all their state intellectual disability institutions and shifted to community care. The Arc believes that the growing community wait list problem is tied to Virginia’s continuing institutional focus.

Today, the average annual cost per person in one of the five state training centers is $194,000. The average cost of care for those in community homes is $95,000. Our families on wait lists don’t understand why our revenue-strapped state government is insistent on using our scarce taxpayer dollars to pay three times to build and twice to operate state institutions.

The Arc believes the 75-bed rebuild violates the Americans with Disabilities Act’s community integration requirement. The Arc felt so strong about this issue that it requested the Virginia Office of Protection and Advocacy to bring legal action in federal court against the Kaine administration last October seeking to stop the SEVTC rebuild. The judge ruled in December that the case was not “ripe” for judicial action as the rebuild had not yet occurred and no one was as yet in it.

In a letter dated Jan. 29, The Arc asked Gov. Bob McDonnell to suspend the SEVTC rebuild because of the high construction costs, the high operating costs, the continued segregation of persons due to their disability and the adverse impact on Virginia’s future ability to fund critically needed waivers for persons now living with their families all across Virginia. These wait lists are now more than 5,900 persons with no new waivers recommended for the next 21/2 years.

It is important to understand that these persons on the waiver wait list meet the same eligibility as the residents of the state institutions. In fact, families “waive” their legal right to institutional care and sit on the waiting lists. Why? They want community care for their sons and daughters, not placement in an institution.

The issue is all about the future. The Arc wants Virginia to turn the page and reform its antiquated institutional system and adopt a “community for all” policy.

What about the persons now living in the institutions? What will happen to them? The answer is quite simple. These people will move to small community homes with all the individualized supports they need and deserve. How does The Arc know this will work? It is already being done all across the country. In addition, we’re already doing it in Virginia and have been doing it here successfully for the past 40 years. Today more than 4,240 persons are already living in community homes funded by the waiver. The 5,900 people on the waiver wait lists are living at home. The 4,300 school-age children with severe intellectual or multiple disabilities attending public school special education programs are living at home.

The scary number for The Arc is the 17,000 persons with intellectual or developmental disabilities living at home with parents 60 years or older. These are the persons who will need help in the future as their parents become physically unable to continue as caretakers or die. These families do not want institutional placements for their family member; they want community care.

What about the current institution staff? What will happen to them? All the direct care and medical/clinical staff will still be needed. The Arc supports state operation of community homes using existing staff. There are concerns by families about the need for a state-operated safety net. The state can fulfill this role in community settings.

If our state government is really the country’s best-managed state, it can surely step back and reassess an earlier decision to be sure the public policy and fiscal implications are understood and sound. It is the prudent and common sense thing to do. It takes leadership. The Arc is asking our governor and legislators to provide it.

Maryland residents protest cuts to Medicaid

February 26th, 2010

By Erin Gibson, News Channel 8

ANNAPOLIS, Md. – Hundreds of disabled people marched to the statehouse in Annapolis Thursday demanding more help as state budget cuts threaten to hurt their quality of life.

Anissa Brown was among the hundreds of people with developmental disabilities and their supporters. She says the marchers are trying “to get them not to cut the budget anymore.”

Brian Saal was also present during the march. “More money. We need more money,” Saal said.

Among the participants were parents who say they are burned out and stressed out from caring for their children without any help.

Beth Monroe’s daughter has been waiting 11 years to get services.

“Right now, I can’t die. There is no one to take care of her. She is not part of a system,” Monroe said.

State funding cuts coupled with increased need have left programs and people struggling. More than 19,000 people now on the waiting list for assistance.

We’ve had to shrink programs, we’ve had to consolidate group homes, we’ve had to do many, many things to keep our budget balanced, and every time we turn around, there’s another cut,” said Frank Zappala with Arc of Montgomery County.

Mike Knox, 35, has Spina Bifida and Hydrocephalus and the Arc of Montgomery County, which provides support and services for people with developmental disabilities and their families, has had to cut back on helping him find a job.

“Even though I am in a wheelchair…I am still thirsty for work and I am still like everyone else. I deserve that chance,” Knox said.

Advocates for the disabled are lobbying for a 10 cent tax on alcoholic drinks and other cost-sharing measures, and are taking the message directly to lawmakers.

The protesters say Maryland is among the nation’s richest states, but ranks 43rd in the amount of money spent on services for people with developmental disabilities.

Families outraged by Delegate Robert Marshall’s remarks

February 24th, 2010

By The Arc of Virginia

The Arc of Virginia is surprised and disappointed by remarks attributed to Delegate Robert Marshall indicating he believes children with disabilities were “God’s punishment.”   Such unfortunate remarks continue to lend credence to the stigma people with disabilities and their families are fighting to overcome.

 Since this issue went public today, many family members who heard the audio remarks have contacted The Arc to express their outrage over Delegate Marshall’s statements.   Delegate Marshall has issued an apology saying he “regrets any misimpression my poorly chosen words may have created as to my deep commitment to fighting for these vulnerable children and their families.”  The Arc takes him at his word.

Mr. Howard Cullum, President of The Arc of Virginia said, “Many of our families are struggling with the 24/7 care taking demands.  It is rewarding but hard work.  Families don’t appreciate statements that can be construed to connect having a disabled child with some religious punishment.  Our families don’t need the grief or the guilt”.

According to Mr. Cullum, “The Arc families are especially sensitive now because of proposed state budget cuts to critical services that support persons with intellectual or developmental disabilities.  The Arc appreciates yesterday’s House and Senate budget reports that seek to restore some of the services.  However, the important waiver program is still slated to lose 1,134 waiver slots that were scheduled to begin reducing the long wait lists.  Our wait list families are in pain and crisis.”

The waiver wait list is now over 6,000 persons and growing rapidly.  The lack of waivers means families will now have to wait at least another two years before any new waiver slots are available.  Some families have already been waiting for years.  The safety net for our families is in tatters.

Historically, Virginia’s track record for valuing the lives of people with disabilities has not been good.  The Commonwealth was notorious for its history of involuntary sterilization, for its state-sponsored segregation and institutionalization and for its minimal help for families. Even today, Virginia is currently ranked 46th in the country for its community support of people with developmental disabilities and their families. 

At a time when the majority of states are moving people with intellectual disabilities out of institutions, Virginia is the only state seeking to rebuild costly, segregated state institutions for people with intellectual disabilities.  The Arc is hopeful that Delegate Marshall’s comments, however offensive to our families, draw public attention to the plight of families caring for persons with disabilities in our state.

Arc Action Alert: stand up against the proposed budget cuts

February 19th, 2010

The Arc of Virginia Action Alert: Last Minute Push for “Community for All”

On behalf of the Arc, thank you for helping us get 1,200 emails in to the Governor’s office this week.  Now, we need your help to do a last minute push for “Community for All” at the General Assembly. The money committees will be presenting their versions of the budget on Sunday, which means we have less than 72 hours to make sure the message of “Community for All” is heard loud and clear.

The fight is down to the wire.  With additional cuts being proposed to community-based services (see below), the call to action has become even more urgent.

 CLICK HERE TO SEND AN EMAIL TO YOUR DELEGATE AND SENATOR RIGHT AWAY.

Ask them to:

• Oppose cuts to community services for Virginians with developmental disabilities
• Stop rebuilding large, segregated institutions

And make sure to tell them why it is important to have a community where everyone is included.

Status of the State Budget:

The House and Senate money committees will release their versions of the budget on Sunday, February 21^st in Richmond.  This will tell us where we stand on proposed cuts community services and plans to rebuild state institutions.  

After the committees report their budget bill out of committee, the budget bills will then go the floor of each respective house for a vote on the budget bill next week.  Delegates/Senators will then have a chance to stand up for/against items in the budget bill-including funding for community services and the rebuilding of state institutions.

Will your Delegate and Senator stand up for “Community for All”?  Please send an email to your Delegate and Senator as soon as possible-ask them to take a stand!

Governor McDonnell proposes further cuts to services

As noted above, the fight for “A Life Like Yours” has become even more urgent.

Yesterday, Governor McDonnell announced his proposal for filling a $2 billion hole in the budget.  One of his proposals was to eliminate all consumer-directed services for people on Medicaid Waivers. (This is in addition to the cuts that were already proposed in Governor Kaine’s budget.)

What would this mean to families?
The consumer direction option for families receiving Medicaid waiver would be eliminated (applies to ID, DD, EDCD and HIV/AIDS waivers).  No longer would families be able to hire their own attendants for personal/respite/companion care.  Over 8,000 people with disabilities would be impacted.

What are the details of the proposal?
The proposal assumes that 50% of all families currently receiving consumer-directed services would be able to access agency-directed services.  The remaining 50%, the proposal assumes, would not be able to access services at all.

Is the Governor’s proposal included in the budget bill?
Not yet, but the proposal is now officially “on the table” for discussion.  The House and Senate money committees will be presenting their own versions of the budget on Sunday.  The Governor’s proposals may or may not be included in those budgets.  It will be up to families to make your feelings known, helping theGeneral Assembly make the right decision.

What can you do?

Join the email campaign to Virginia General Assembly, ask them to protect community-based services for Virginians with disabilities and STOP rebuilding institutions.  CLICK HERE to send a polite email or call to your Delegate and Senator TODAY!  Let them know how YOU are affected. 

Major cuts proposed to services for Virginians with disabilities

February 17th, 2010

The Virginia General Assembly is considering major cuts to Medicaid services that will reduce the number of hours of respite from 720 hours to 240 hours a year; reduce Medicaid Waiver provider rates by 5%; increase waiting lists for the DD and ID/MR Waivers; stop new enrollment into the DD, EDCD, and ID/MR Waivers; eliminate thousands of jobs, including personal care attendants/aides and respite staff; eliminate podiatry services and adult optometry services and reduce therapy services.

Contact your State Senator and Delegate, the Governor, and leaders of the legislative money committees.  Let them know that these cuts will negatively impact you, your friends and family, and your community.

Contact information for your Senator and Delegate is at: http://conview.state.va.us/whosmy.nsf/main?openform

You can also call or email the following:

Senator Colgan, Chair of the Senate Finance Committee
district29@senate.virginia.gov, 804-698-7529

Senator Houck, Chair of the Senate Finance Health and Human Resources Subcommittee
district17@senate.virginia.gov, 804-698-7517

Delegate Putney, Chair of the House Appropriations Committee
DelLPutney@house.virginia.gov, 804-698-1019

Delegate Morgan, Chair of the House Appropriations Health and Human Resources Subcommittee
DelHMorgan@house.virginia.gov, 804-698-1098

Governor McDonnell
www.governor.virginia.gov/TheAdministration/contactGovernor.cfm, 804-786-2211