News to Know 10/4/2012

Published Oct. 4, 2012

News to Know 10/4/2012

Articles include: In Arlington, people with disabilities take the stage and 'the joy just comes out'; Free Workshops in October for those Eligible for But Not Receiving Paid Services from DDD; Report: Parents With Disabilities At Risk; Hospital labeled Down syndrome man ‘Do Not Resuscitate’ without his knowledge: lawsuitHospital labeled Down syndrome man ‘Do Not Resuscitate’ without his knowledge: lawsuit; Nearly 5 percent raises across 2 years awarded to home-care workers; Presidential Proclamation - National Disability Employment Awareness Month, 2012; Around the south, disabled children leaving institutions; Is this what’s next for Florida?; A Neurodiverse Community UnConference; Washington State Developmental Disabilities Council Agency Roundtable; Finding Your Voice Seminars & Parent Institutes Come to Eastern Washington; Brown signs bills on developmental center abuse - California; Tara’s Law To Provide Protections For The Developmentally Disabled Moves Forward – New Jersey; N.J.'s 'Forgotten People': The developmentally disabled; New Autism Care Rules Require Some To Pay For Once Free Services - Pennsylvania; Autism charity continues fundraising despite Oregon warning, probe; and LEGISLATIVE FORUMS/COFFEES

The information contained in these articles is for informational purposes only and should be evaluated by each recipient for content accuracy and applicability. Some articles are provided only to educate about a variety of perspectives on issues. It is not intended to represent the viewpoint of The Arc of Washington State or the Advocacy Partnership Project. Click on the link below each story to read the entire article.

In Arlington, people with disabilities take the stage and 'the joy just comes out'
Some may not be actually playing their musical instruments, just strumming them. But in the world created by the Voices of the Village band of Arlington, the members, some with severe disabilities, take the stage for the first time in their lives.
ARLINGTON, Snohomish County — He has the moves of his hero, Johnny Cash. The sweeping turn with his right arm. A little smile as he points at the audience. Some who've watched Corey Anderson, 26, could easily believe he is playing that guitar. He isn't. As Anderson strums, the actual music comes from Jon Dalgarn, a professional musician who has his gear — electric guitar, drum machine, a small P.A. system — set up in the back of the Arlington United Church social hall. Every Friday afternoon here, some two dozen men and women, each with a disability, some using wheelchairs, some in their 40s with the intellectual functioning of a small child, gather for a session of Voices of the Village. The music takes over, and they're performing it, even if many are not actually playing it.
Free Workshops in October for those Eligible for But Not Receiving Paid Services from DDD
Last month we highlighted that the Washington State Developmental Disabilities Council (DDC), The Arc of King County and the Arc of Spokane are co-sponsoring two one-day workshops for parents, families and guardians of people with developmental disabilities who are eligible for, but are not receiving, any services from the Division of Developmental Disabilities.  Space is limited, but there is still some space available in both workshops.  
Activities in the workshop will include:
• Connecting with other families
• Creating a vision with and for their family member with developmental disabilities
• Developing an action plan to increase the visibility and voice for those who are still waiting for services
The one-day workshops will be held on October 20th in Spokane and October 27th at SeaTac. A flyer with further details about the workshops and how to register is located on the home page of the Informing Families Building Trust website.
Report: Parents With Disabilities At Risk
A federal agency is warning the White House that more protections are needed to ensure the parental rights of those with disabilities. Even as an increasing number of Americans with special needs choose to become parents, laws across the country routinely undermine their rights, according to a National Council on Disability report which was sent to President Barack Obama on Thursday. In two-thirds of states, courts are allowed to deem a parent unfit solely based on their disability. And, disability can legally be taken into account in every state when assessing what’s in the best interest of a child, the council found. “Even today, 22 years after the passage of the Americans with Disabilities Act, parents with disabilities are the only distinct community of Americans who must struggle to retain custody of their children,” wrote Jonathan Young, chair of the National Council on Disability in a letter to the president that accompanied the report. Currently, some 6.1 million children in the United States have parents with disabilities. They are significantly more likely than other kids to be forcibly separated from their parents, the federal agency found.
Hospital labeled Down syndrome man ‘Do Not Resuscitate’ without his knowledge: lawsuit
MARGATE, UK, September 20, 2012, ( – A 51 year-old man with Down syndrome is suing the hospital where he was issued with a do-not-resuscitate order without either his or his family’s knowledge or consent. The Queen Elizabeth the Queen Mother Hospital in Margate, Kent, said the man, named AWA in the legal documents, should not be revived in the case of a heart attack or respiratory failure, and listed his disability as the only reason. His horrified family only found out about the order after he was released from the hospital. The paperwork was found folded up in his belongings, the Daily Mail reports. His lawyers have said the decision for the DNR order was “nothing short of blatant prejudice” and have filed suit in the High Court.
AWA needs constant care and receives his food and hydration through a gastric tube. He was admitted to the hospital September 7th to 26th last year, and received daily visits from his family. His lawyer, Merry Varney, of Leigh Day & Co solicitors, said, “This is definitely one of the most extreme cases we have seen of a DNR order being not only imposed on a patient without consent or consultation, but to use Down Syndrome and learning difficulties as a reason to withhold life-saving treatment is nothing short of blatant prejudice. If an individual was physically preventing a doctor from administering life-saving treatment to a disabled relative, it would undoubtedly be a matter for the police, yet we see doctors taking this decision without consent or consultation regularly.”
Nearly 5 percent raises across 2 years awarded to home-care workers
An independent arbitrator has awarded pay raises of nearly 5 percent in each of the next two years to Washington’s roughly 45,000 home-care workers who now earn as little as $10.03 an hour. Under the settlement finalized late last week, workers who bathe, clothe, dress, and cook and clean for elderly adults and the disabled could see their pay reach $11.03 per hour in July 2014. The full agreement could cost taxpayers $134 million, according to an estimate for Service Employees International Union 775 Northwest. The governor and Legislature still need to approve the deal. Arbitrator Sylvia Skratek was given the case after talks broke down between SEIU and Gov. Chris Gregoire’s negotiators. Skratek’s order also would preserve health care benefits for individual workers and reimburse them for travel costs for up to 100 miles a month. SEIU had sought a starting wage of $12.25 and other improvements in compensation. The governor’s Office of Financial Management declined to comment on the order, but SEIU held a news conference Tuesday in Olympia to outline the deal. The proposal would raise home-care workers’ starting pay to $10.53 in July 2014 and $11.03 in July 2015, and create a new “experienced worker” wage – $13.84 an hour in 2013 and $14.53 in 2014 – for those who have logged at least 14,000 hours of work since 2005. Home-care worker Darryl Johnson said that moves the workers a little closer to a living wage.

Read more here:
Presidential Proclamation - National Disability Employment Awareness Month, 2012
"In the 22 years since the signing of the Americans with Disabilities Act, we have made significant progress in giving all Americans the freedom to make of our lives what we will. Yet, in times of prosperity as well as challenge, people with disabilities have had fewer opportunities in our workplaces than those without. As we work to revitalize our economy, it is essential that each of us can bring our talents, expertise, and passion to bear in the marketplace. But a stronger economy is not enough; we must ensure not only full participation, but also full opportunity. During National Disability Employment Awareness Month, we recognize the indispensable contributions people with disabilities make in our economy and recommit to building a country where each of us can realize the full extent of our dreams."

Read the full text of the proclamation at the following link:
Around the south, disabled children leaving institutions; Is this what’s next for Florida?
As Florida and the federal government face off over allegations the state is unnecessarily keeping children in nursing homes, it’s worth a look at where this could be headed. In a front-page Sunday story, the New York Times looked this weekend at what’s happening in Georgia, which reached a settlement with the feds in 2010, leading to what “Advocates for the disabled are hailing the move as akin to the demise of racial segregation,” as hundreds of children are brought out of state-run hospitals and nursing facilities and into the community: Once viewed as outcasts to be shunned and isolated in institutions, hundreds of Georgia’s most disabled citizens are taking their first tentative steps back into society. Their fledgling journeys, marked by uncertainty, jubilation and some setbacks, are unfolding as officials embark on an ambitious plan to profoundly reshape the lives of the cognitively and physically impaired.
A Neurodiverse Community UnConference
Building a future for people of all abilities
Friday, October 19, 2012 » 9 AM – 4PM
Brought to you by UW CARE and Northwest Center
Can you see a future where all people have equal access to a meaningful and productive life? Do you want to talk to others who share that vision? Do you want to be part of a movement that actively works toward achieving these goals? Join us for the first Meaningful Life Café for the Adult Neurodiversity Community where we will turn conversation into action! We will build a shared vision of an inclusive and vibrant community that values and supports people of all abilities. This powerful, new social change forum enables us to experience the power of community, showing us that by acting together, we really can create a meaningful future for all. We'll interact with a broad cross-section of parents, professionals, business leaders and self-advocates in frank and open conversation that will help us reflect deeply on what services and opportunities for adults with disabilities mean to each of us, individually and as a community. With the results of our conversations, we, as a group, will come up with concrete steps to transfer our newly-acquired insight and knowledge to our communities and workplaces. These projects will be supported by the UW CARE throughout the year.
Washington State Developmental Disabilities Council Agency Roundtable
October 19, 2013 from 8:30 to 10:00 am
SeaTac International Airport Conference Center
Assistive Technology Financing & Policy Round Table
For this DDC meeting, the agency roundtable will focus on Assistive Technology Financing & Policy. Each speaker will provide a brief description of their programs and related policy issues. We are very excited to also be able to host a conference call with Marcia Tewell, Executive Director, Colorado Development Disabilities Council.  Marcia will share information about their successful campaign to convince Colorado Medicaid to cover iPads and related apps for communication purposes – something that we may well want to add to our policy agenda! 
8:30 – 8:50.  Frances Pennell, Executive Director, Washington Access Fund.   Introductions/Low interest loans and matched savings accounts for Assistive Technology!
8:50 – 9:10  Heather Evans, Employment Coordinator, Highline Community College Achieve Program.   Innovative uses of iPads & apps to help Transition students with intellectual disabilities succeed in post-secondary education and job placement.  Policy implications!
9:10 – 9:30  Marsha Threlkheld, Senior Program Manager, Training & Innovative Projects.  Innovative uses of iPads in job development and coaching including Pierce County DD’s iPad project.
9:30 – 9:50  Marcia Tewell, Executive Director, Colorado Developmental Disabilities Council.  Advocacy/strategies for convincing Medicaid to cover iPads for communication purposes.

For more information, contact or call 360 586 3540
Finding Your Voice Seminars & Parent Institutes Come to Eastern Washington
Spokane - Nov. 1, 2 ,3  2012
Lower Yakima Valley  - Nov. 15, 16, 17, 2012
Tri-Cities - Spring 2013
The Finding Your Voice Seminar is a 3-day training for school and family professionals who work with parents and families whose children attend K-12 public schools. Participants learn how to teach the Finding Your Voice curriculum that help parents understand and navigate the public schools system. Participants practice teaching parents during the Saturday Parent Institute that is included in this event and commit to teach the FYV workshops in the communities they serve.  The Office of the Education Ombudsman provides on-going technical support for trainers.
Office of the Education Ombudsman - Governor's Office
155 NE 100th Street, Suite 210 • Seattle, WA 98125-8012
206-729-3232 or Toll-free 1-866-297-2597 • Fax 206-729-3251 •
Special Education Conference: Challenges and Innovations from Infancy to 12th Grade
Sponsored by Rehab Seminars
A Professional Continuing Education Event
March 6, 7, & 8, 2013 (Wednesday, Thursday & Friday)
Shoreline Conference Center
Greater Seattle, Washington Area
Courses Designed for Regular and Special Education Teachers and Support Staff
Five concurrent courses will take place, all three days, to best meet your professional needs.

For more information, (360) 379-6994 or go to:
Brown signs bills on developmental center abuse - California
Gov. Jerry Brown signed two bills yesterday to require California’s developmental centers to alert outside police and a disability protection organization when patients die under suspicious circumstances, are abused or are seriously injured. The state operates five board-and-care institutions for more than 1,600 people with cerebral palsy and intellectual disabilities in Sonoma, Orange, Tulare, Riverside and Los Angeles counties. An in-house police force, called the Office of Protective Services, patrols and investigates crimes against the centers’ patients. In a series of stories this year, California Watch has reported how the force has failed to complete basic police work, even in assault and death cases. State lawmakers drafted the measures – SB 1051 and SB 1522 – in response to the news coverage. The bills were marked “urgent” and took effect immediately. Advocates for the developmentally disabled praised the governor’s action as a step toward better protecting the vulnerable.
Tara’s Law To Provide Protections For The Developmentally Disabled Moves Forward – New Jersey
TRENTON – Legislation to create more stringent oversight of community care facilities servicing the developmentally disabled and provide a clear methodology for investigating potential instances of abuse continues advancing. The measure (A-2573) is named “Tara’s Law,” in memory of 28-year-old Tara O’Leary, a developmentally disabled woman who had been residing in a licensed community care residence in the state. Over a 2.5-year period, she lost a dangerous amount of weight, failed to attend the majority of her day programs and was finally admitted to a local hospital, weighing only 48 pounds and suffering from dehydration, malnutrition and bedsores. When, despite efforts of the hospital staff, O’Leary’s condition did not improve, she was disconnected from life support and died. While O’Leary was under community care, she underwent a medical examination, as required under current Department of Human Services (DHS) regulations. However, the physician did not take protective custody of her at that time, nor was O’Leary’s condition reported to DHS. “The tragedy of Tara’s death is that it was preventable,” said Assemblyman Patrick Diegnan (D-Middlesex). “When it comes to the developmentally disabled, clear chains of communication are a literal lifeline to survival. Systemic breakdowns in that chain simply cannot be allowed to occur again.” “Among other things, developmentally disabled individuals rely on their caregivers to be their communications link with the rest of the world,” said Assemblyman Craig Coughlin (D-Middlesex). “When that link breaks, fails or is ignored, tragedies like the one Tara’s family experienced occur. By creating multiple ways to test those links, we can help prevent future miscommunications from becoming tragedies.”

Read more:
N.J.'s 'Forgotten People': The developmentally disabled
The responsibility for investigating the abuse and neglect of people with developmental disabilities who are in residential care in New Jersey lies with the Department of Human Service’s “Special Response Unit” (SRU). This past May, the New Jersey State Assembly approved a non-binding resolution to transfer the responsibility for investigating abuse and neglect among developmentally disabled individuals from the Special Response Unit to the Office of the Attorney General. The resolution, ACR-147, passed by a margin of 50 to 23, with 3 abstentions. The initiative leading to the vote on the Assembly floor was the result of complaints that were echoed by the parents and families of people with developmental disabilities who reside in New Jersey’s developmental centers, foster homes, group homes, nursing homes, and supervised apartments, or are enrolled in day training programs. Assemblywoman Valerie Huttle (Democrat, Bergen) sponsored the resolution after hearing family members testify about abuses before the Human Services Committee, which she chairs. Unfortunately, the resolution was never entertained in the Senate, and the initiative went nowhere. However, everyone agrees that only a small fraction of the reported cases of abuse are ever investigated. The families of the disabled victims have lost any trust or confidence in the ability of the Department of Human Services to protect their loved ones.
New Autism Care Rules Require Some To Pay For Once Free Services - Pennsylvania
PITTSBURGH (KDKA) – Parents of children with autism are protesting new rules that took effect today in Pennsylvania, which will require parents at certain income levels to partially pay for services that used to be free. Nicki Gratton, of Plum, is one of them. She has three children. Jeremy has cerebral palsy and Riley has pervasive developmental disorder, which is a type of autism. Gratton told KDKA-TV’s Dr. Maria Simbra that three home visits per week to help her with her children’s behavior issues have “been a God-send.” The Pennsylvania Department of Public Welfare used to provide these services at no charge for 48,000 children with mental and physical disabilities. However, families earning more than $45,000 a year will now have to pay co-pays ranging from $1 to $3 per service. Items such as medical equipment, physical, occupational and speech therapy and outpatient services are exempt. Cathy Hughes with Family Behavioral Resources, which provides services now subject to co-pays, said the change could be devastating.
Coping Strategies; Meeting Holiday Needs of Everyone in the Family
The holiday season is a time of laughter, joy, anticipation, and surprises. However, for families raising individuals with sensory and neurological disorders it can be a very stressful time of year. Throw in a mix of typically developing children, who enjoy and can handle the added stimuli, and you have just described a parent dilemma. How do we as parents meet the needs of all family members?  Sometimes we set ourselves up to think we can’t succeed in meeting everyone’s needs. We do the best we can and realize that nothing is perfect, neither are we and that’s okay.
Autism charity continues fundraising despite Oregon warning, probe
A charity under investigation by the Oregon Department of Justice has continued to advertise for paid fundraisers in the Portland-Vancouver area four months after telling state prosecutors it was shutting down. In June, saying Olympia-based Autism Awareness United appeared to have broken state laws, DOJ threatened legal action if the organization did not agree to stop raising money in Oregon. However, as of Friday, the group had not signed any agreement, and according to autism activists, has continued to raise money from Oregonians using paid fundraisers who set up tables outside supermarkets and other stores. The state's investigation turned up receipts showing the nonprofit's debit card was used to pay for meals, cocktails, Chianti and other, unidentified expenses at a local casino. While not illegal, such expenses raise questions with charity oversight experts about a group's effectiveness. Meanwhile, Autism Awareness spent just 3 percent of its funds from late 2010 through early 2012 on direct assistance to needy families or autism-related agencies, according to documents obtained by The Oregonian under public records law. In late March, the state launched its investigation after receiving an inquiry from The Oregonian as well as a citizen tip that the group had been selling raffle tickets in Oregon, which, if involving $10,000 or more, is legal only for charities that are federally tax-exempt. Autism Awareness United is a state-approved nonprofit, but not federal. The group's president, Joe Searles, denied wrongdoing in an interview early this year but declined to respond to follow-up requests for information, including for this story. Searles is a latecomer to professional charity work. He pleaded guilty to illegal gambling in 1985 for running a sports-betting operation from a government car on work time as a state mail courier in Washington. Last year he agreed to a five-year ban from the mortgage business after a Washington state administrative action and several lawsuits were filed accusing his real estate businesses of fraud. In April 2010, Searles and his wife started fundraising for the Autism Society of Washington, a long-standing group, under a 12-month contract that let the Searles keep 80 percent of what they collected. The society's board later canceled the contract and sent documents to the state of Washington alleging Searles' group used "deceptive practices in soliciting the money." The nonprofit's stated mission is "to spread awareness about autism spectrum disorders, and to raise funds to assist low-income families in gaining access to available interventions, therapies and resources." According to documents turned over to DOJ, the group raised about $276,000 between late 2010 and early 2012, while dispersing $8,750 in direct grants to families and other groups that help autistic people, including $2,000 in Oregon. The group submitted a financial report to Washington state earlier this week saying it raised $199,760 in 2011 and spent $122,000 on "program services." However, it's unclear whether the charity included salaries and payments to fundraisers, because the state does not clearly define program services, according to state charities officials. Autism Awareness United offers no direct services of its own, according to documents and interviews, and instead acts as a fundraiser for other nonprofits. In documents submitted to Oregon DOJ, Autism Awareness reported paying small amounts to its managers, including less than $40,000 to Searles' wife. Receipts turned over to Oregon show payments for meals, donuts, alcohol and numerous hotel stays, as well as a veterinary bill and several debit-card purchases at the Nisqually Red Wind Casino in Olympia, Wash. Included is a $201.70 receipt for a staff lunch with wine and beer at Portofino, an Edmonds, Wash., restaurant as well as a $90.35 afternoon tab for two employees at the Vancouver Olive Garden, including a bottle of wine and a cocktail. In May, the group's lawyer informed the Oregon DOJ that "My client is shutting down the charity and will likely operate as a commercial fundraiser." Later that month, Searles applied to be a commercial fundraiser in Oregon but has not completed the necessary paperwork. His group appears to have sold raffle tickets and used unregistered fundraisers unlawfully, the state informed Searles' lawyer. This month, the state has continued asking the group to sign an agreement to not raise funds in Oregon. The Washington attorney general's office launched its own investigation of Autism Awareness United earlier this year, according to the documents. A lawyer who worked on that investigation, Shannon Smith, said she could not confirm or deny it is ongoing. Asked to speak generally about the use of donation money for cocktails, she said, "I think that that's really bad conduct and I think that it should be illegal. But I don't think it is, because they'll just say that's an administrative expense."

From the Autism Family Support Foundation: Since February 2012, our Autism Family Support Foundation has had no communication or financial relationship with the board or staff of the Autism Awareness Washington/United organization.  The last donation we received from AAW was on Dec. 16th 2011.  We have received no funds from AAW during the 2012 year due to our decision to no longer accept donations from this organization. I have been informed that our brochures and information may still be found on tables around the state.  We asked in February 2012 to cease using our Autism Family Support Foundation as a resource or reference.  If this is continuing, it is happening without AFSF Board  permission.  I have tried to contact AAW to talk about this problem, but have not been able to reach them.
Patty J. Gee, M. Ed,  Autism Therapist, ASFS Board Chair

From The Arc of Washington State: The Arc is reportedly being represented on Autism Awareness United (AAU) fundraising tables. The Arc does not have any agreement or contract with AAU and does not endorse this group.
Sue Elliott, Executive Director
The Arc of Washington State


Pierce County
October 8, 2012 6:30-8:30 p.m.
Pierce County Candidate Forum - WA State Senate & House
District 2 (Roy, Orting, Eatonville)
District 25 (Milton, Fife, Puyallup, Midland)
District 27 (NE Tacoma, Pt. Defiance)
Puyallup United Methodist Church - 1919 W. Pioneer, Puyallup
A Candidate Forum on the ability of our communities to provide for the growing population of older adults and individuals with disabilities – the vast majority wanting to remain in their own homes in the community.  In-home care and long term services and support, Consumer choice and direction, Medicaid expansion and availability of overall services, Implementation of the Affordable Care Act, Growth in vulnerable populations.
For more information call Pierce County Aging & Disability Resource Center (253) 798-4600 or (800) 562-0332
Requests for accommodations must be received by Sept. 21 (253) 798-7376 or
Clark County
The Clark County Disabilities Coalition Candidates forum
When: Tuesday October 9, 2012
Time: 5:30 – 6:30 Networking
6:30 -8:30 Presentation
Location: Clark College Gaiser Hall
Formal invitations and additional information to come soon.  Please contact Darla Helt @ 360-907-3287 or for questions.
Candidate Forum For WS House and Senate and TC Commissioner Positions
October 9, 2012  7:00 p.m.
River Ridge Covenant Church
7945 Steilacoom Road SE
Olympia, WA 98503
Everyone Welcome!
The ARC of WA State, Career Quest, CARR, CEA, Community Resources, EFI, ESP, Kokua, Lacey Group Home, Morningside, Parent to Parent, People First, Senior Services, St Mike’s CCS, WISE
Snohomish County
The Arc of Snohomish County - Parent/Family Coalition
2012 Legislative Candidates Forum
Thursday October 11, 2012
Everett Station Weyerhaeuser Room
3201 Smith Avenue, Everett
This is your opportunity to meet your Snohomish County candidates and hear their views on supporting individuals with intellectual/developmental disabilities and their families.
Your personal stories and connections with your legislators can and will make a difference!
If you have any questions or would like to help out with the event please contact:
Kelly Church at 425-258-2459 x107, or
Tracie Diemert at 425-258-2459 x111
Pierce County
Pierce County Coalition for Developmental Disabilities (PC2)
November 13, 2012
7 – 9 pm (check-in at 6:30)
Franklin Pierce High School
Additional information - (253) 564-0707
King County
23rd Annual Legislators’ Forum on Developmental Disabilities for King County
Doubletree Guest Suites - 16500 Southcenter Parkway, Tukwila, WA 98188 (Southcenter)
Monday, Nov. 19, 2012
6:30 PM check-in
Program starts at 7:00 PM-8:30 PM
All interested persons are welcome! There is no charge. Speakers will include self-advocates, family members and community members. This is the largest gathering of our Developmental Disabilities community in our county each year. You can meet other family members, advocates, county, regional and state staff. You can talk to your legislator before or after the program. Important: In case of inclement weather the day of the forum please check The Arc of King County website at: or call 206-829-7048. PLEASE COME - YOUR PRESENCE IS IMPORTANT!
If you need an interpreter, contact Michaelle Monday at 206-263-9055 or TTY Relay 711 by Friday, November 9th
Questions, Call Betsy McAlister, 425-882-2010
Sponsored by the King County Board for Developmental Disabilities and the King County Parent Coalition for Developmental Disabilities a program of The Arc of King County