WellCommons

Lawrence resident Ranita Wilks has heard the horror stories about women with disabilities who have had such humiliating experiences during a doctor’s appointment that they didn’t go back.

Sometimes, it’s an issue of not having a mammogram machine that’s adjustable or a restroom that’s not wheelchair accessible. Sometimes, it’s a provider’s attitude or lack of education. Wilks said a woman with cerebral palsy didn’t go back for a pap smear after her doctor told her she would need someone to hold down her legs which have spasms. About 10 years later, she was diagnosed with ovarian cancer.

Wilks, 44, who suffered a spinal cord injury at age 4 and uses a wheelchair, also has had difficult experiences. She shared them during a one-on-one interview at Independence Inc. in Lawrence, where she works as an independent living skills specialist.

She said her doctor suggested removing her uterus without even asking what she wanted or talking about her options.

“She just assumed that I wasn’t going to be a mom,” Wilks said, with frustration in her voice. “Women with disabilities aren’t supposed to be sexually active or you are not going to be moms or anything of that nature. That’s a common theme among women with disabilities.”

Wilks is part of a Community Engagement Initiative project in Lawrence that’s working to improve health care access for people with disabilities. The project has specific steps and guidelines to help achieve success, and it was developed by Kansas University’s Research and Training Center on Independent Living.

It’s just one of about a dozen projects to come out of the center each year, which recently was awarded a five-year, $4.25 million grant from the National Institute on Disability and Rehabilitation Research.

Lawrence resident Kara Laning gets some help from Ranita Wilks, left, who is an independent living skills specialist at Independence Inc. Laning was taking a cooking class Wednesday, Oct. 26, 2011, at Independence Inc, 2001 Haskell Ave. Laning said she learned to cook healthier through a program called Living Well. The program is among a dozen that come out of the Kansas University’s Research and Training Center on Independent Living each year. Wilks is involved in another program that's working to increase health care access for people with disabilities. by Richard Gwin

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Glen White is director of KU’s Research and Training Center on Independent Living, or RTCIL, which serves about 450 independent living centers across the country, including Independence Inc.

KU works in partnership with other colleges to research issues pertaining to people with disabilities and from that research it creates training programs to help them — hence its name.

White said the center’s main goal is to make sure its work is relevant to the one in eight people who have a disability.

“You can make the greatest product and invention in the world but if people don’t use it or like it, then what’s the use of spending all of the money? We don’t want it on a bookshelf collecting dust.”

White said the key component of their research is people with disabilities.

“We don’t want to just create something for people with disabilities. We truly want to have them involved and that’s really critical in the research that we do,” he said. “We want them to advise us as we go along.”

About 10 employees work at the center, which is on the fourth floor of the Dole Human Development Center on KU’s main campus. One-third of them, including White, have disabilities. White said he was injured in a car accident at age 15 and it left him paralyzed from the waist down.

“So, I’m not just talking from the ivory tower; these are things that I’ve experienced every day of my life,” he said.

Among the center’s research projects under way:

• Academic success. It is teaching students with disabilities how to advocate for themselves at Kansas University, Kansas State University, Haskell Indian Nations University and other colleges. White said students need to know what accommodations they are entitled to under the American With Disabilities Act and how to respectfully ask professors and university personnel about those accommodations so they can be academically successful.

White recalled attending a junior college in Minnesota where he depended on other students to carry him to a class that was up four flights of stairs.

“I didn’t know any better and I didn’t know how to advocate,” he said. “Now, there’s a new law that’s opened the doors for a lot of people. Although the law exists, it doesn’t mean it still doesn’t happen.”

• Living well. The center has created a training manual to help people with disabilities learn to exercise and eat healthier. This includes learning how to read labels and cook healthier. Participants also visit community recreation centers to see how accessible they are and learn exercises they can do. This program is offered in a number of cities, including Lawrence, where it is provided through Independence Inc. and Wilks is coordinator.

“Sometimes isolation and depression can be high in people with disabilities and exercise helps reduce things like pressure sores and depression and just getting involved in the community helps overall health,” she said.

Some participants have lost between 15 and 40 pounds and improved their overall function through the program.

• Access to health care. The KU center developed a guide to help communities pull together to remove barriers for people with disabilities. In Lawrence, the project is under way. First, they gathered information about what the barriers are for people with disabilities. Now, the center and Independence Inc. are meeting with health professionals to educate them and talk about solutions. For example, on Wednesday they will be meeting with Lawrence Memorial Hospital’s facilities director to talk about parking issues.

Glen White, director of Kansas University's Research and Training Center on Independent Living, works in his office on the fourth floor of the Dole Human Development Center. The center works in partnership with other colleges to research issues pertaining to people with disabilities and from that research it creates training programs to help them.

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Access to health care is a real problem in Lawrence.

During a community forum in June, people with disabilities identified the following as top barriers:

• Transportation — No public transportation available evenings and Sundays, lack of inexpensive alternatives for off-hours, and insufficient spaces at health facilities, including LMH.

• Infrastructure — Inaccessible facilities and equipment, insufficient number of providers for specialty needs, and lack of durable medical equipment providers and services.

• Knowledge and attitudes — Lack of knowledge about effective delivery of preventive services for people with disabilities, stereotyping, unwillingness to provide accommodations, and focusing on a person’s disability rather than the person’s overall health.

Wilks shared a frustrating experience she had with an orthopedic doctor.

She said she made an appointment because she was having pain and numbness in her hands and had a couple of falls. During the appointment, Wilks said the orthopedist said flippantly several times, “Well, you know you use your hands as your feet.”

She said there was no discussion about how she used her hands to transfer or the types of treatment available. At first, he wasn’t going to do anything, then he advised her to take Advil and provided her with a brace.

“My hand is now immobilized. No discussion or concern about that — an orthopedic surgeon. All it did was make my situation worse,” she said.

Like anyone else, she uses her hands to cook, get dressed and bathe, among other everyday tasks. She ended up finding care elsewhere and has relieved the pain through warming methods and massage techniques.

“I had a pretty tough childhood, so I’m not much about crying over minimal things, but it was sort of kind of a depressing thing when I left,” she said. “He didn’t get the bigger picture.”

BECOME AN EDUCATED MEDICAL CONSUMER

Independence Inc. and Health Care Access have teamed up to offer a free class on how to become an educated medical consumer.

It will be from 2 p.m. to 4 p.m. Wednesday at Independence Inc., 2001 Haskell Ave. Participants will receive course notes and a book, “What To Do When Your Child Gets Sick.”

The class is open to anyone and will address the following questions:

• Do you leave the doctor’s office having more questions than when you entered?

• Do you feel you want to take a more active role with your doctor when communicating about your disability?

• Do you wonder whether your symptoms justify a trip to the doctor?

• Do you need help knowing where to get resources before going to the doctor?

To pre-register for the class, contact Alison McCourt at 841-0333 Ext. 105 or amccourt@independenceinc.org.

Stroke survivor Njeri Shomari, Lawrence, shared her story during the Champion of Independence luncheon Tuesday, July 26, 2011, as part of a weeklong celebration for the 21st anniversary of the Americans with Disabilities Act. by Kevin Anderson

In a moment, Njeri Shomari’s life drastically changed four years ago at age 52.

She had suffered a transient ischemic attack — commonly called TIA. It’s a warning sign that a stroke may happen if something is not done to prevent it.

She had surgery in a Virginia hospital to help prevent stroke, but instead the opposite happened. The surgery caused a stroke.

When Shomari woke up, she couldn’t do anything. She couldn’t lift her hand or legs. She couldn’t swallow. She also had trouble speaking, but she was able to utter four words to her family: “Don’t worry. I’m alive.”

Shomari has made significant progress since suffering the stroke on April 2, 2007 — a day she refers to as her second birthday. The grandmother of three lives by herself. She can walk short distances without assistance and speaks eloquently. She is pursuing a master’s degree in social welfare at Kansas University.

“Every day that I open my eyes is a good day,” she said during a luncheon Tuesday at Maceli’s in downtown Lawrence that was attended by about 100 people. It was a fundraiser for Independence Inc., an agency that provides a variety of services for people with disabilities.

Shomari emphasized that she wouldn’t be able to be independent without the help of family, friends and complete strangers — those willing to get something down from a shelf at the grocery store, for example.

“I can celebrate my independence because I have been able to depend on others,” she said.

She also depends on agencies like Independence Inc. for services like transportation and use of computers, and it’s an agency that’s experiencing funding cuts.

“It’s scary to open emails every day,” said Stacey Hunter Schwartz, executive director of Independence Inc. She said they just lost $60,000 from the Kansas Department of Social and Rehabilitation Services for attendant care.

“That’s the latest blow,” she said.

Hunter Schwartz said Independence Inc. honored Douglas County administrator Craig Weinaug with its first Champion award during the luncheon because he gives “great thought” to the ramifications of budget decisions. She said he also tries to solve problems for organizations, even when it’s not his job.

“He’s someone who doesn’t just push the papers around. He really tries to understand what each organization provides to the community and he cares about the citizens of the community receiving those services,” she said. “They are not just functions, objects and numbers to him.”

Douglas County administrator Craig Weinaug received the Champion of Independence award during a luncheon Tuesday, July 26, 2011, at Maceli's in downtown Lawrence. by Kevin Anderson

Weinaug, 59, pulls from his personal experiences.

At 10 months old, he suffered an extremely high fever that caused brain damage. As a result, his right side is partially paralyzed. He walks with a limp and can have trouble opening a door with his right hand.

Weinaug doesn’t consider it a disability, but rather an asset.

“It does give me a sensitivity to the needs of people that sometimes can be met by private resources and sometimes can’t,” he said. “Sometimes, they need public resources in order to be successful.”

Attending the first Champion of Independence Inc. luncheon are, from left, Mary Irving, Nick Banks, Joseph Sabol and Barbara Sabol, all of Lawrence. by Kevin Anderson

Jessie Kwatamdia, left, and Lori Yocum attend the first Champion of Independence luncheon Tuesday, July 26, 2011, at Maceli's. by Karrey Britt

Attending the Champion of Independence luncheon are, from left, Glynn Sheridan, Natalie Donovan and Karen McGrath, all of Lawrence. by Karrey Britt

Employees of Independence Inc. are, from left, Jill Enyart, Medicaid services director; Stacey Hunter Schwartz, executive director; and Meghan Kinley, development director. Independence Inc. provides a variety of services for people with disabilities in Northeast Kansas. by Karrey Britt

WEEKLONG CELEBRATION

Independence Inc. is having a weeklong celebration to mark the 21st anniversary of the Americans with Disabilities Act and to raise money for its home modifications program and other services. The luncheon and a motorcycle Poker Run on Saturday were part of the festivities.

Here's the rest of the lineup:

• Wednesday — ADA Celebration.

Mayor Aron Cromwell will talk about the city’s support of ADA during a community celebration from 6 p.m. to 8 p.m. at The Oread hotel, 1200 Oread Ave. The event is free and open to the public.

• Friday — Wine tasting and jazz night

The event is from 6:30 p.m. to 9 p.m. at Davenport Winery, 1394 E. 1900 Road near Eudora. Attendees can taste and purchase wines and listen to live music by Key West Jazz. Participants are encouraged to bring their own picnic dinner or snacks. There is no cost, but donations will be accepted.

Six-year-old Orion Baldwin can play outside like other kids thanks to a new wheelchair-accessible ramp.

Orion was born three months premature and has cerebral palsy. It affects his ability to walk, so he uses a wheelchair, walker or his arms to get around.

His father, Chris, said Orion didn’t go outside much before the ramp was built last fall. There were four steps that led to their home in south Lawrence, and they were difficult to navigate.

“It was really hard getting him up and the door open,” Chris said.

With the ramp, Orion has gained a little independence.

“For him, it makes him more like a kid. He’s able to go outside by himself when the weather is right,” Chris said.

Orion Baldwin, 6, plays in the snow on his new wheelchair-accessible ramp. The ramp was made possible with assistance through Independence Inc., a nonprofit agency that helps people with disabilities.

The Baldwins were able to get the ramp through a program administered by Independence Inc., a nonprofit agency that provides advocacy, services and education for people with disabilities in northeast Kansas.

Independence Inc. receives about $30,000 a year through a community development block grant program funded by the city of Lawrence to assist low-income families in making needed modifications to their homes.

Cindy Pippert, housing specialist with Independence Inc., said a typical ramp costs about $4,500. The funding generally helps about six families with ramps and other modifications like grab bars and widening doors.

She said the grant money will soon be depleted for this year. Typically, there are two or three families on the waiting list.

“This service is a huge need for our community,” she said.

Making matters worse, the Kansas Accessibility Modification Program was eliminated in 2010. The program provided as much as $500,000 in funding statewide for low-income families who needed to make accessibility modifications. Independence Inc. received between $13,500 and $40,000 annually to help people in five counties. Now, that’s gone.

“Some people wind up living in nursing homes because they can’t get into their own homes. So the need is great,” Pippert said.

Chris Baldwin said that it would have taken years before he would have saved up enough to pay for the ramp. He’s grateful for the local funding.

“It’s made a world of difference in my son’s life,” he said.

Orion Baldwin, 6, attends a Christmas recital at Sunflower School.

Six-year-old Orion Baldwin waits as his father, Chris, takes off his leg support braces as the two relax in their Lawrence home Thursday, July 21, 2011. In the fall, the Baldwins received a ramp outside their home with the assistance of Independence Inc. for Orion, who was born with cerebral palsy. The organization has lost significant funding for ramps since the closing of the Kansas Accessibility Modifications Program last year. by Nick Krug

Independence Inc. is having a weeklong celebration to mark the 21st anniversary of the Americans with Disabilities Act and to raise money for its home modifications program and other services.

Here’s the lineup:

• Saturday, July 23 — Second annual Poker Run

The motorcycle ride starts at 10 a.m. at Slow Ride Roadhouse, 1350 N. Third St. It continues to Kelley’s in Basehor, Kobi’s in Bonner Springs, Beer Thirty in De Soto, and ends back at Slow Ride Roadhouse. Riders pick up a card at every stop, and the person with the winning poker hand is announced at 2 p.m.

Cost is $15 per rider and $5 per poker hand. There’s also a chance to win a Harley Davidson motorcycle. There’s no pre-registration. Last year’s ride drew 40 participants.

• Tuesday, July 26 — Champion of Independence Luncheon

Independence Inc. will honor Douglas County administrator Craig Weinaug, and stroke survivor Njeri Shomari will be the keynote speaker.

The event will be from 11:30 a.m. to 1 p.m. at Maceli’s, 1031 N.H. Cost is $40 per ticket. The registration deadline is 5 p.m. Friday, July 22, and can be done by contacting Meghan Kinley at 841-0333, Ext. 143 or mkinley@independenceinc.org.

• Wednesday — ADA Celebration

Mayor Aron Cromwell will talk about the city’s support of ADA during a community celebration from 6 p.m. to 8 p.m. at The Oread hotel, 1200 Oread Ave. The event is free and open to the public.

• Friday, July 29 — Wine tasting and jazz night

The event is from 6:30 p.m. to 9 p.m. at Davenport Winery, 1394 E. 1900 Road near Eudora. Attendees can taste and purchase wines and listen to live music by Key West Jazz. Participants are encouraged to bring their own picnic dinner or snacks. There is no cost, but donations will be accepted.

Make A Difference Day is still in need of several volunteers for this Saturday. The Roger Hill Volunteer Center is coordinating volunteer projects throughout Lawrence and Douglas County at a number of agencies. Projects include painting, outdoor cleanups, native woods restoration and much more. Individuals, families, and groups are invited to sign up for this important national day of service. All projects will be completed by 4 p.m., before the Kansas University Homecoming parade and game begin. Contact the RHVC office at 865-5030 or visit www.volunteerdouglascounty.org to get registered.

• Independence Inc. is seeking volunteers for its Peer Counseling program. Peer counselors are people with disabilities who offer assistance to others with disabilities by providing advocacy, information, training and emotional support. Volunteer peer counselors will receive training in listening and counseling skills, teaching skills and procedures. Their work is supervised and they are provided ample opportunities for additional training and networking with other peer counselors. For more information, contact Daniel Brown at 841-0333 or dbrown@independenceinc.org.

• LMH’s Breast Center is in need of customer-service oriented volunteers who want to be a part of a team dedicated to promoting early detection of breast cancer. Volunteers will assist with making appointment-reminder phone calls, answering phones and helping with mailings. If you have a few hours to give once a week on Monday, Tuesday or Friday mornings at LMH South, at Kasold Drive and Clinton Parkway, please visit www.LMH.org to complete a volunteer application, or contact Allyson Leland at 505-3141 or allyson.leland@lmh.org for more details.

• The Lawrence Humane Society is in need of volunteers for its Animal Fair on Nov. 14 at the Douglas County Fairgrounds. Volunteers will assist with monitoring booths, passing out information, selling concessions and more. Please contact Elliot Werner at 843-6835 or volunteer@lawrencehumane.org.

• Trinity In-Home Care is in need of volunteers who would like to join its Friendly Visitor program, which matches volunteers and individuals with similar interests for an optimal companionship experience. Generally, the program is designed to provide one or two hours a week of companionship to any individual, 18 years of age or older. Volunteers must pass a background check. For more information, contact Scott Criqui at 842-3159 or scott@tihc.org.

— For more volunteer opportunities, contact Shannon Reid at the United Way’s Roger Hill Volunteer Center, at 785-865-5030 or volunteer@rhvc.org, or go to www.volunteerdouglascounty.org.

The party will be from 6 p.m. to 8 p.m. Monday, July 26, in South Park, 12th and Massachusetts streets. In case of rain, it will be at St. John the Evangelist Catholic Church hall, 1200 Ky.

The program includes speeches, live music, refreshments and drawings for door prizes.

The ADA was signed into law on July 26, 1990, by President George H.W. Bush and won strong bipartisan support in Congress.

“Since passage of this law, millions of people with disabilities are more visible and vital to public life in the United States. The 20th anniversary of the ADA’s passage is a time to celebrate liberty, justice, and access for all. Our event reflects the deep Kansas and Lawrence traditions of commitment to equal rights and justice.”

— Ray Pence, an event organizer

The ADA is the most significant and sweeping federal legislation to ensure civil rights for people with disabilities in the history of the United States. It facilitates public access, accommodation and inclusion for people whose disabilities substantially limit one or more major life activities. It has benefited people whose disabilities range from multiple sclerosis, blindness and spinal cord injury to intellectual disabilities and traumatic brain injury.

The free community even is being organized by Independence Inc., Cottonwood Inc., and other local disability organizations and activists.

Rev it up for a good cause!

Independence Inc. is having its first fundraising event — a motorcycle Poker Run — on Saturday, July 24.

The money will help the nonprofit agency provide advocacy, services, and education for people with disabilities in Lawrence and area communities. It serves about 1,000 people annually.

Registration will be from 10 a.m. to 11 a.m. at Slow Ride Roadhouse, 1350 N. Third St. Motorcyclists will pick up cards at five places, and the rider with the best hand will win a prize. The stops include Perry Bar & Grill, Helen’s Hilltop in Tonganoxie, Kobi’s Club & Deli in Bonner Springs, and Cecil’s Monday Bar & Grill in Eudora. The event will be from 11 a.m. to 4 p.m., and motorcyclists need to start riding by noon.

The Poker Run ends at Set’em Up Jacks, 1800 E. 23rd St., where a barbecue buffet will be served, and the winner announced.

If you sign up by Friday, July 9, there is a $5 discount. Otherwise, the cost is $25 per rider and $20 per passenger. The cost includes a T-shirt and buffet.

For more information or to pre-register, contact Meghan Kinley, development director, at 841-0333, ext. 143 or mkinley@independenceinc.org. Riders can sign up on the day of the event.