Ione Johnson of Bethesda Lutheran Communities to Serve on State Council

Governor Ted Kulongoski recently appointed Ione Johnson, Quality Enhancement Director for Bethesda Lutheran Communities, to the Oregon Council on Developmental Disabilities. Johnson will serve as a provider representative member and will offer the unique perspective and ideas that come from working for a nationwide service provider.

According to the Oregon Council on Developmental Disabilities Web site, the committee serves as a forum to listen to the thoughts and ideas of Oregon citizens who have a vested interest in the welfare of people with developmental disabilities. The Council provides opportunities for citizens to be heard at forums, conferences and town hall meetings.

“Ione’s position on the Council is a testament to the hard work and commitment she brings to the job and to people with intellectual and developmental disabilities,” says Dr. John Bauer, president and CEO of Bethesda. “We are extremely proud of her and are anxious to see what will come of her role with the Council.”

As part of the Council, Johnson will also serve on the policy committee where she will be charged with analyzing public policy initiatives and recommending actions to the Council and developing and maintaining a portfolio of Council public policy statements.

“This is an exciting opportunity,” says Johnson. “The people I have met are certainly dedicated to ensuring people with developmental disabilities across the state have their voices heard.”

In her position at Bethesda, Johnson is responsible for guiding Bethesda’s Cascade region in designing, developing and implementing processes, procedures and systems that will ensure effective quality services. This includes ensuring compliance with governmental regulations and maintaining and promoting services that reflect Bethesda’s mission.

In addition to her regional work with Bethesda, Johnson was also active in helping to establish a program in Romania. She is the godmother of one of the children who was rescued from a Romanian orphanage.

Advocates Participate in Letter Writing Campaign

In June of this year, the Wisconsin Legislature’s Joint Committee on Finance released a budget proposal that failed to address sustainable funding for people with intellectual and developmental disabilities, putting Wisconsin’s long-term care system in crisis. This includes Intermediate Care Facilities (ICFs), such as Bethesda’s Watertown campus.

When the lack of funding was discovered, Bethesda’s advocacy team knew that there was very little time to act. It was essential that Wisconsin governor Jim Doyle was aware of the effect these budget cuts would have on the state’s most vulnerable citizens. Acting quickly, the team posted an issue alert on the Bethesda Voices Web site and sent out a state alert asking people to write letters to Governor Doyle. The amount of people who took action was staggering. In total, 301 Bethesda supporters wrote letters to Gov. Doyle.

After some trouble, the legislature was able to reach a decision and an ICF preservation study committee is now being assembled. Hopefully as the committee takes the time to look at this issue they will begin to understand the vital role these facilities serve for that relatively small class of people with significant developmental disabilities and severe medical or other problems in need of intensive 24/7 medical and personal supports.

In the process of reviewing the letters that were sent to Gov. Doyle, we discovered just how many compelling stories our advocates have. Rachel Burton, an occupational therapist whose sister Emily has lived on the Bethesda campus for six years, spoke of how fortunate her family feels that Emily is so well taken care of. In her letter to the governor, Rachel wrote, “Her [Emily] needs are always met yet the staff go far beyond just meeting basic needs – they are so truly in tune to these individuals.”

Rachel and Emily’s mother Angel also took the time to both email and write a paper letter to Gov. Doyle. In her letters she wrote, “Bethesda is brimming with unsung heroes who have dedicated their lives to caring for the weakest members of society.”

Gerald Gould, the father of an individual living on campus, addressed the funding issues by writing: “The level of loving care that she [his daughter] receives from the very motivated staff is unparalleled, and we are so grateful to the people of Wisconsin who have provided a portion of her funds over these many years.”

Gov. Doyle also heard from former Bethesda employee Jennifer Teuteberg who served Bethesda on the Watertown campus for three years while also studying to become a registered nurse. Jennifer cited her personal experience when writing to the governor. “I have helped to teach many individuals to be more independent through activities of daily living,” she wrote. “I have seen the enormous impact that Bethesda has made in the lives of those that live there.”

Without a doubt, these letters had a part in ensuring that the proposal of an ICF preservation study committee would be assembled. Once again, the Bethesda Voices team thanks everyone who chose to participate in the Watertown campus campaign and we encourage everyone to make sure his or her own voices are heard!

Michigan Advocates Participate in Rally

On May 12, self-advocates from Michigan gathered in the state capital of Lansing for the Walk a Mile in My Shoes rally. Individuals receiving supports from Bethesda have been participating in this event for two years. This year, seven people with developmental disabilities supported by Bethesda attended thanks to the sponsorship of Saginaw County Community Mental Health Authority (SCCMHA).  In total, about 70 people from Saginaw county participated.

The purpose of this event is to make government officials aware of the funding needs necessary for individuals with intellectual and developmental disabilities to live and work in their community.  Like all states, Michigan is experiencing a budget crisis that is greatly affecting Medicaid funding, an integral part of providing services to people with disabilities.

The possible funding cuts being proposed by the Michigan legislature would have a profound effect on some of Michigan’s most vulnerable citizens.

“The people we support are already struggling,” says Ann Finta, area director in Michigan. “An older lady we support in Frankenmuth only gets $30 in personal fund money per month and the co-pays for her medication are increasing along with everything else, so she has little or no money to spend.”

According to Lydia Stewart, an individual receiving services and supports from Bethesda, she will lose her job coach and caseworker if the Michigan budget cuts go through. Currently, Lydia is employed as a housekeeper, a job that is extremely important to her and brings her a lot of pride.

The chance to go to Lansing to advocate for her rights is something that is very important to Lydia, as well as to her housemates Cheryl Nelson and Jenny Burnett. “They’re taking money and Medicaid and I wanted to go to Lansing to be with my friends,” Cheryl explained when asked why the rally was so important to her. As a member of the Citizens Advisory Committee, Cheryl added that her CEO had encouraged her to participate so her voice would be heard.

Jenny is also concerned about what the budget cuts could mean to her. “I lost my dental cleaning because of Medicaid cuts,” she explained. “It makes me sad. I also fold towels and now I might lose my job coach.”

To find out more about SCCMHA, click here.

Bethesda applauds all individuals who choose to advocate for themselves and their loved ones and encourage anyone with a vested interest to become actively involved in the legislature process. For more information on how you can do this, e-mail voices@blhs.org.

Oregon Self-Advocacy

A group of Oregon individuals with developmental disabilities recently started a self-advocacy program they call “Independent Shepherds.” The group, who started meeting in October 2008 and which currently includes eight members, meets monthly to discuss issues that are important to them and to learn how to best advocate for themselves.

To start with, group facilitator Teresa Lermon, who is also a training instructor for Bethesda, spent time building a foundation in what being a self-advocate means and making sure members knew and understood their rights and responsibilities. To help with this, Ione Johnson, Quality Enhancement Director for Bethesda, developed a rights manual that is being used to lead the monthly meetings.

Members of the group are already excited about what they’re learning. “You have to speak up for yourself,” says Gay Ann Irving, a member of the group.

Others spoke about how they’re learning about their personal rights, such as their right to privacy in their rooms and other personal spaces, as well as how to respect others and their space.

Independent Shepherd member Ruben Sifuentes spoke about what he’s learning about the work place. “If you have a problem at work,” he says, “your supervisor is there to help you. It is ok to talk to them.”

According to Lermon, these lessons may seem minor, but they are not. “To see the light bulbs come on when we talk about the fact that we are all worthy of dignity and respect is amazing!” she says.

Lermon lists education, such as an increase in computer skills, improvement in interpersonal skills, overcoming anxiety and shyness, and learning to advocate as topics currently being discussed by the group.

“Ultimately, the group hopes to have their eight members become experts on their rights so they can become the ‘go-to’ authority for other folks we support,” says Greg Bittke, Bethesda’s regional director for the Cascade region.

The group also hopes to eventually form an advisory committee for new policies that affect the services and supports Bethesda offers. That way, the Independent Shepherds will have the opportunity to offer their insights and personal experiences. The group appears to be well on their way to that goal -- one of the members has already been asked to serve on a human rights committee that will begin meeting in the spring of 2009.

“The group will be encouraged to become involved in political events,” says Bittke. “Especially those that will affect their services or rights.”
The Independent Shepherds list writing letters to local legislators to advocate for change, sitting on community committees, appearing at monthly management meetings, and becoming an advisory group as goals for the future.

“I envision the group expanding and hopefully doubling in size,” says Lermon. “Hopefully we will elect officers with specific duties, develop a mission statement and create specific goals and objectives.”