disabilityrights WISCONSIN

People First Wisconsin, a statewide self-advocacy organization for people with disabilities, is celebrating its 10th anniversary this year by hosting regional celebrations every month. At its June 27th gathering in Oshkosh, People First recognized DRW with an Appreciation Award. Mary Clare Carlson, Executive Director, cited DRW as among the “faithful allies whose support has allowed us to make it these last 10 years,” and added “Thank you for all the years that you have been a faithful friend to People First Wisconsin.”

Congratulations to People First for 10 years of vigorous advocacy on behalf of the people of Wisconsin.

PHOTO: From left to right: Barbara Beckert, DRW’s Milwaukee Office Director; Gary Arms, People First Wisconsin Board Member and Treasurer; Mary Lynn Larson, DRW Board President; and Mary Clare Carlson, People First Wisconsin Executive Director.

Advocacy Specialist Cathy Steffke of DRW’s Milwaukee office wrote this essay about a memorable trip she took with the residents of a supervised apartment program where she worked. It was first published in the Spring 2009 IndependenceFirst newsletter.

Toward the end of my job with an organization called Alternatives Unlimited, I had just started as manager at a new apartment program. Two people from the community moved in. Every residence had a week long vacation decided on by the people living there. A vote was taken and it was decided that this vacation was going to be “down the Cape” if you are speaking Massachusian.

The other two residents were coming from one of the large institutions and were deemed to be so impaired that they were released only at the bitter end. Of course, the institution sent all of these terrible reports about them. They were “spitters,” “hitters,” and “biters.” You have to find a way to justify the years of wretched treatment of “those” people when, as staff, you systematically stripped their humanity from them and made a darned good living doing it.

The vacation was only a few days after they arrived at their new home. In the few days they were there they were thrilled and amazed. They had their first taste of freedom. After an explanation of what a vacation was and seeing some past vacation pictures, they agreed to go on vacation too. The institution staff was horrified. It was bad enough that these violence-prone people were walking our streets but now this, a vacation? Were we letting the inmates run the asylum? (Yes we were.) They could not be held responsible for whatever havoc was raised against the poor unsuspecting residents of Cape Cod. It’s funny how well-behaved people can be when you take your foot off their necks and invite them to live freely.

Off we went, 6 of us, me, the four guys and another staff person who had a peg leg and enjoyed dressing up like a pirate. We tried to dissuade him from this practice because it didn’t align too well with the philosophy of normalization. It was slightly alright for an ocean vacation as long as he didn’t overdo it. The vacation was fabulous. First beach for them, first pirate for me, first beer in a beach chair at sunset, making friends with local folks and their pets, first trip to a restaurant, first try at pinball; let’s just say it was a festival of firsts.

At one point I did have to come down on the pirate because I found him strolling the beach with two of the guys, pant leg rolled up, a bandana on his head and his shirt tied at the midriff in a knot. Oh, and there was a hoop earring as I remember. I’m pretty sure he liked the attention this brought him. I, on the other hand, did not. That was the worst thing that happened over the weeklong vacation. Nobody was bitten, beaten or otherwise hurt. We managed to keep enough sunscreen on everyone to prevent serious sunburns.

We had a little extra money at the end of the week and bought 2 lobsters and some steamers, enough for everyone to get a taste. We kept the lobsters in a cooler on the porch and the guys were just fascinated. What strange little animals. Around dinner time we started to prep the meal. One of the men filled the lobster pot with water and another filled a pot partway for the clams. The stove went on, the water started to boil, and the lobsters were brought in. One of the men realized what was about to happen first and started to melt down. Another one of the men caught on and started to lose it. The pirate and I freaked out. Long story short… those violent inmates from a Massachusetts institution implemented the first lobster catch and release program on Cape Cod.

They did like the steamers though. Anytime you dip something in melted butter it’s bound to taste good.

By Alan J. Borsuk of the Journal Sentinel

Posted: Jun. 21, 2009

A federal judge has ordered Milwaukee Public Schools to launch a wide search for students who didn’t get special education services they should have gotten between 2000 and 2005 and to figure out what needs to be done to make that up to them.

U.S. Magistrate Judge Aaron Goodstein ordered that someone from outside the system be hired to monitor work on providing education services to compensate the students or former students involved because MPS has not shown it will adequately remedy its problems in special education on its own.
Click here to read the rest of Judge orders search for MPS students in need of special education - from Milwaukee Journal-Sentinel »

On May 30, the National Council on Jewish Women’s Milwaukee Chapter presented Barbara Beckert with the Barbara Stein Building Bridges Award. To quote the event program, the award was created “to honor the achievements of persons who demonstrate exceptional talent and dedication in building meaningful linkages between different agencies, organizations, and people.”

Barbara has been on the NCJW board for over ten years. The group’s focus on addressing issues of poverty through a variety of strategies, including educating and empowering community members to effectively self-advocate, dovetails nicely with Barbara’s work as Director of DRW’s Milwaukee office.

The program included a quote from Margaret Mead which Barbara often cites - “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it’s the only thing that ever has.” Barbara lives this philosophy every day at DRW and in all her other contributions to the Milwaukee community. Congratulations, Barbara and keep up the good work!

PHOTO: Barbara Stein (right) displays the award before presenting it to Barbara Beckert (left).

Senate Bill 27 requires health insurance policies and plans to cover the cost of hearing aids, which include any externally wearable instruments or devices designed to enhance hearing, and cochlear implants, which include any implantable instruments or devices designed to enhance hearing, that are prescribed by a physician or audiologist in accordance with accepted professional medical or audiological standards, for any child under 18 years of age who has coverage under the policy or plan and who is certified as deaf or hearing impaired by a physician or an audiologist. Treatment (defined as services, diagnoses, procedures, surgery, and therapy provided by a health care professional) for such a child that is related to hearing aids and cochlear implants is also required to be covered.

Coverage for hearing aids is not required to exceed the cost of one hearing aid per ear per child more often than once every three years. The coverage requirement applies to both individual and group health insurance policies and plans, including defined network plans and cooperative sickness care associations; to health care plans offered by the state to its employees, including a self−insured plan; and to self−insured health plans of counties, cities, towns, villages, and school districts. The requirement specifically does not apply to limited−scope benefit plans, Medicare replacement or supplement policies, long−term care policies, or policies covering only certain specified diseases. The required coverage may be subject to any limitations, cost−sharing provisions, or exclusions, other than a preexisting condition exclusion, if these limitations apply generally under the policy or plan.

Hearing aids and cochlear implants are already covered under all BadgerCare plans except for the BadgerCare Benchmark Plan. This bill does not apply to children covered under the BadgerCare Benchmark Plan. Also, although this bill covers self-insured plans of the state, counties, municipalities and school districts, the state does not have the authority to regulate private self-insured plans. Therefore, this bill does not apply to children insured under private self-insurance plans.

There are approximately 200 babies born each year in the state of Wisconsin who are deaf and hard of hearing. According to a survey conducted by the Wisconsin Families for Hands & Voices, 54% of the parents surveyed did not have insurance that covered any of the cost of hearing aids or cochlear implants. Research shows that early intervention through hearing aids or cochlear implants can allow a child to maximize their language and speech and that it can provide a savings of between $5,000 to $10,000 per child per year in reduced or eliminated special education services. And over a lifetime, early intervention can reach a savings of about 1 million dollars per person .

Wisconsin joins 13 other states in passing legislation requiring coverage of hearing aids for children who are hard of hearing; however each state differs in the scope and strength of the law. These states include Colorado, Connecticut, Delaware, Kentucky, Louisiana, Maine, Maryland, Minnesota, Missouri, New Jersey, New Mexico Oklahoma, and Rhode Island. Kentucky is the only other state to mandate the coverage of cochlear implants. Wisconsin’s law is broad in that it covers both hearing aids and cochlear implants, it covers children up to 18 years old, and it does not limit the coverage of hearing aids to a specific dollar amount.

Disability Rights Wisconsin worked in conjunction with legislators and hundreds of families, children, professionals, and adults affected by hearing loss across the state to get this bill passed. It was a strong and well organized grassroots movement. Organizations involved in advocating for this bill include the Wisconsin Families for Hands & Voices, The Hearing Loss Association of America - WI, Wisconsin Speech-Language Pathology and Audiology Professional Association, Board for People with Developmental Disabilities, LetKidsHear.org, Center for Deaf and Hard of Hearing, Wisconsin Association of School Boards, Marshfield Clinic, Wisconsin Council of Children and Families, Wisconsin Association of Independent Living Centers, and the Wisconsin Primary Health Care Association to name a few. The Department of Pubic Instruction, Office of the Commissioner of Insurance and the Department of Health Services were also supportive of the bill.

Senate Bill 27 was signed into law by Governor Doyle on May 21st, 2009 as 2009 Wisconsin Act 14 and goes into effect on January 1, 2010.

If you have questions or would like additional information, contact Alicia Boehme at Disability Rights Wisconsin at 608/267-0214 or aliciab@drwi.org.

Disability Rights Wisconsin (DRW) expressed its appreciation and support for the criminal justice measures included in the budget bill approved by the legislature’s Joint Finance Committee, noting that these measures will have a substantial positive impact on the lives of Wisconsin citizens with disabilities. Many of these actions are based on recommendations developed through a collaboration between the Council of State Governments’ Justice Reinvestment Initiative (JRI) and a WI Legislative Council Study Committee.

Lynn Breedlove, DRW Executive Director, said that these measures represented “an exercise of tremendous vision and leadership on the part of the elected officials and citizens who were involved in the process – including Governor Doyle, Chief Justice Abrahamson and former Assembly Speaker Huebsch, who joined together to seek JRI’s assistance for Wisconsin; the members of the Legislative Council Study Committee; the Joint Legislative Council, where legislators from both parties supported the recommendations; and the members of Joint Finance who supported the Corrections Motion authored by Representative Pocan and Senator Taylor.”

DRW noted that the proposals combined the JRI recommendations with a complementary set of proposals from the Governor. These proposals are premised on proven principles of risk reduction, as demonstrated in the other states that, by implementing JRI’s data-driven, evidence-based strategies, have experienced dramatic improvements in public safety and significant reductions in their corrections spending. Similarly, the JRI recommendations for Wisconsin are projected to result in a 25 % reduction in recidivism rates and will prevent a 21% increase in Wisconsin’s prison population over the next 10 years, thereby averting $ 2.5 billion in additional corrections spending.

“People with disabilities have a direct stake in criminal justice system issues – first, because they are far too often the victims of crimes – including assaults, domestic violence, and sexual abuse; and second, because dramatic increases in corrections spending, which has doubled over the past ten years, threaten the funding for the services and supports needed by people with disabilities. The results of these reforms, fewer crimes and the savings of $ 2.5 billion in corrections spending, will improve the lives of people with disabilities,” said Todd Winstrom, DRW Staff Attorney for Corrections.

The proposals also included measures intended to improve the effectiveness of DOC’s response to inmates with mental illnesses and developmental disabilities. For example, JRI’s recommendations included the allocation of $ 8 million over the course of the biennium to prevent recidivism by providing community based mental health care for individuals with serious mental illness being
released from prison. Other proposals, developed in response to the recent Legislative Audit on Inmate Mental Health included:

▪ Creating a pilot Community Reintegration Program for inmates with serious mental illness, based on a model proven to improve public safety by reducing recidivism while actually saving money by preventing costly reincarcerations.

▪ Providing the additional resources necessary to continue improving mental health care at Taycheedah, as required to prevent further legal action by the U.S. Dept. of Justice.

▪ Ending the practice of officer delivery of medications at Taycheedah Correctional Institution, as required by a federal court order.

▪ Requiring DOC to begin planning for ending officer delivery of medications at all of its other facilities.

▪ Requiring DOC to begin planning for improved screening and service delivery for inmates with developmental disabilities.

Winstrom identified these proposals as “crucial first steps in making sure that DOC provides appropriate treatment and support to inmates with mental illnesses and developmental disabilities,” but pointed to the “essential next steps, such as fully funding the JRI Reinvestment recommendations for reducing revocations, improving mental health services for male inmates with serious mental illnesses, and expanding the pilot Community Reintegration Program.”

In summarizing DRW’s reaction to the Criminal Justice Reforms in the state budget, Executive Director Breedlove said that the members of Joint Finance “capitalized on an unprecedented opportunity to achieve a critical policy goal, improved public safety, through responsible stewardship of the state’s resources in this time of fiscal crisis.”

Following is the text of an article that appeared in the Wisconsin State Journal:

THU., MAY 14, 2009
Group sues UW Hospital over policy on withholding treatment from disabled patients
By JASON STEIN
608-252-6129
jstein@madison.com

In a case that could have broad legal implications for when some patients are allowed to die, an advocacy group is alleging that doctors at UW Hospital broke the law by withholding treatment from two developmentally disabled patients with apparent cases of pneumonia.

The guardian of one patient, who survived, at first went along with and then later disagreed with the decision to withhold care, the lawsuit by Disability Rights Wisconsin alleges. The parents of the other patient, who died, pushed for the withdrawal of treatment, according to the group’s complaint filed Thursday in Dane County Circuit Court.

One medical ethicist said the case could help to clarify a difficult question in state law: How much power do families and guardians have to make medical decisions for vulnerable patients such as children and the developmentally disabled?
Disability Rights contends state law prevents parents and guardians from withholding treatment from patients who can’t make that decision for themselves unless they are in a “persistent vegetative state,” a condition the group says did not apply to the two patients in the lawsuit.

But a spokeswoman for UW Hospital said the hospital acted in the best interests of both patients and tried to follow the wishes of their families.

“What is at stake in this case is no less than patients’, parents’ and families’ ability to make private health care decisions in the best interests of the patient,” spokeswoman Lisa Brunette said in a statement.

Disability Rights is suing to change hospital practices and to recover the $4,700 it spent investigating the cases, plus legal costs. Attorney Mitch Hagopian said he worried some UW Hospital doctors may be too quick to suggest withdrawing treatment from a developmentally disabled person they perceive to have a low quality of life.

“It’s a great medical institution. They provide great care to their patients,” Hagopian said. “All we want is for them to provide that same great care to developmentally disabled people who are not dying.”

Dr. Steven Leuthner, a bioethicist at the Medical College of Wisconsin, has written about one of the legal cases cited by Disability Rights in its lawsuit.

Leuthner, who is not a lawyer, said the group had reached a plausible interpretation of a 2002 case in which a state appellate court found that parents could not withhold care from children not in a vegetative state. But he faulted the judges in that case, who he said incorrectly interpreted a previous Supreme Court case, making for a troubling precedent. The decision also left parents powerless to act in their children’s best interests, he said.

“That would be my hope of what would come out of this, that (the courts) would recognize the problem in” the previous case, Leuthner said.

No family members of either UW Hospital patient could be contacted because Disability Rights is withholding their names to protect their privacy. Neither family is involved in the lawsuit, which is focused only on the hospital’s actions.

In the first case, the family of a then 72-year-old developmentally disabled patient identified as “J.L.” complained to Disability Rights about “what the family believed was undue pressure on the part of a (UW Hospital) physician to terminate life-sustaining medical treatment,” according to the lawsuit.

On May 1, 2008, the patient was brought to UW Hospital with apparent pneumonia. After a discussion with Dr. Julia Wright that included J.L.’s quality of life, the family agreed to discontinue the patient’s medications and not use a feeding tube.
When J.L. woke up the next morning and asked to eat, the family sought to restart treatment but encountered resistance from Wright, the lawsuit alleges. Wright ultimately agreed to put J.L. back on antibiotics and J.L. returned to the nursing home to recover.

Wright could not be reached for comment.

Brunette said Wright is “well-respected and highly competent” and said UW Hospital doctors would only present options to families, not pressure them to choose one over the other. She disputed the lawsuit’s presentation of both the law and the facts of each patient’s case.

The complaint “in no way captures the patients’ true health status and the complexity of the decision-making process and the benefits and burdens of continuing medical treatment,” she said.

The other case involved M.E., a then 13-year-old patient with severe developmental disabilities that left him unable to speak. During the summer of 2006, the parents of M.E. worked out a plan with UW Hospital doctors to limit medical treatment for conditions such as pneumonia in the future because of his “poor prognosis and poor quality of life,” the lawsuit alleges.

In November 2006, M.E. developed apparent pneumonia and the staff at the long-term care facility where he was staying, Bethesda Lutheran Homes in Watertown, sought an order from his doctors at UW Hospital to treat him with an antibiotic. When UW Hospital doctors ultimately declined to give the order, citing the wishes of M.E.’s mother, Bethesda Lutheran staff decided to give the patient antibiotics anyway because they believed it was possible to treat M.E., the lawsuit alleges.

Bethesda Lutheran spokesman David Morstad declined to speak about the case, citing privacy concerns. But he said the staff at the Christian long-term care home believe those with developmental disabilities “should receive medical care for treatable illnesses just as non-disabled citizens do.”

“We believe that the law in Wisconsin is clear that people with developmental disabilities should receive medical care for treatable illnesses unless they are dying or in a persistent vegetative state,” Morstad said.

The boy’s parents objected to the treatment and transferred him on Nov. 20, 2006, to UW Hospital, where he did not receive treatment and where nutrition and fluids were stopped. From the hospital he was transferred to a hospice facility where he died on Nov. 22, according to the lawsuit.

THE SUIT AT A GLANCE

The news: Disability Rights Wisconsin sued UW Hospital and Clinic to change the hospital’s policy for withholding treatment from developmentally disabled patients.

At issue: The lawsuit highlights what one bioethicist says is a flawed state legal precedent regarding parents’ right to withhold care from children.

Click here to read the article on the Wisconsin State Journal’s website.

The Board of Directors of Disability Rights Wisconsin (DRW) will be conducting a Listening Session in Ashland on Friday, June 19, 2009 from 5:00 p.m. – 7:00 p.m.

DRW is the designated protection and advocacy agency for people with developmental, physical, or sensory disabilities and people with mental illness in Wisconsin. DRW engages in a variety of advocacy strategies, including one-on-one advocacy for individuals and their families; systems advocacy (influencing state and county policy, legislative advocacy and coalition building); class action and impact litigation; and providing training to people with disabilities, their family members, human service professionals, attorneys and others on a variety of disability related topics.

The DRW Board wants to hear from people with disabilities, their families, friends, disability activists, service providers and other concerned individuals about your ideas for the future of disability advocacy and the issues that need to be addressed in the areas of special education, developmental disability, mental health and physical disability services and disability rights.

You are invited to come speak with the DRW Board to help us identify the issues and priorities for people with disabilities. We hope to see you there!

WHEN: Friday, June 19, 2009 from 5:00 p.m. to 7:00 p.m.

WHERE: Hotel Chequamegon, 101 Lake Shore Drive West
Beverages will be provided.

BUS: Bay Area Rural Transit buses from Red Cliff, Bayfield, Washburn, Ashland, and Odanah stop at 2nd Ave and Main St, one block from the Hotel Chequamegon; contact Bay Area Rural Transit 715-682-9664 for bus schedule

QUESTIONS: Toll Free 800- 928-8778 Voice or 888-758-6049 TTY/Textnet

ASL interpreters will be provided. If you need any other accommodation or language interpretation to participate in the Listening Session, please contact Linda Apple by June 10 at applel@drwi.org, Toll Free: 800-928-8778 Voice, or 888-758-6049 TTY/Textnet.

At an event earlier this spring, the National Disability Rights Network (NDRN) honored DRW for child advocacy, especially with respect to our successful lawsuit against the Milwaukee Public Schools and our multifaceted approach to reduce restraint and seclusion in schools and treatment settings.

In accepting the award on behalf of DRW, Managing Attorney Jeff Spitzer-Resnick acknowledged the many staff members in all DRW offices who have helped achieve these goals, and recognized the outside agencies and advocates who were important partners in our efforts.

NDRN cited Wisconsin as an excellent example of the work Protection & Advocacy agencies can do to protect children.

The Wisconsin State Legislature has approved a bill mandating insurance coverage of hearing aids and cochlear implants for children. DRW’s Executive Director, Lynn Breedlove, says, “This is a great win for kids with hearing impairments. In the next 10 years, many kids’ lives will be greatly impacted by this new law.”

DRW Advocacy Specialist Alicia Boehme was a leading force in this effort. She mobilized parents of children with hearing impairments and worked with several legislators during the long fight to get the measure passed.

Governor Doyle signed the bill into law on Thursday, May 21.

A big “Thank You” to all the advocates who contacted their legislators and the governor to support SB 27. Wisconsin is now the first state in the nation to offer such coverage!