Transition Is…

 

Sometimes, unexpected or scary but also real and exciting

 

There are specialty clinics and hospitals throughout the country to address the unique needs of children with disabilities like cerebral palsy, but the same is not true for adults. Once people with disabilities reach the age of 18 or 21 they often have to stop seeing their pediatric providers, only to find there is no adult provider to take their place.

 

This is a major issue that affects young adults and adults with disabilities throughout the country, and contributes to a range of health inequalities and other issues. As we have addressed before, transitioning from pediatric care to adult care can be particularly difficult if your new doctor has little to no familiarity with disability.

 

Adults with disabilities need access to the same care as other adults, but they also need providers who are familiar with the unique needs that may come along with disability, and that is when young adults with disabilities can feel as though they’ve entered a void. However, one UCP affiliate is working to bridge that gap in a particularly creative and comprehensive way.

 

UCP of Minnesota/Gillette Specialty Children’s Hospital is the home of Gillette Lifetime, a clinic for patients with lifelong disabilities such as cerebral palsy and spina bifida who are ages 16 or older.

 

Kathy Lindstrom, an Advanced Practice Registered Nurse, at the Lifetime Clinic, says it grew out of an unmet need in the community.  Lifetime Clinic’s Transition Program started as, “a grassroots movement put together based on patient needs. “

 

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

Kathy Lindstrom Advanced Practice Registered Nurse, at the Lifetime Clinic

 

 

Easier, with the right resources and support

 

The services at Gillette Lifetime Transition Clinic merge medical needs with the unique psychological and social needs of transition-aged young adults with disabilities. As Lindstrom explains “everything seems to change when patients reach the late teenage years; it’s not just medical, but in all aspects of their lives.”

 

Lindstrom says, “Legal decision making becomes an issue, [so does vocational] planning, post high school planning and discussions about future living arrangements.  Parents are bogged down with meeting the challenges of daily life, and sometimes it can be hard to develop a vision for the future… and so transition sneaks up on families.”

 

Parental involvement in the process often shifts at this stage, so it’s also important to prepare both parents and young adults for this change.

 

Transition is not a simple process that happens overnight, or automatically, on a patient’s 18th birthday. Lindstrom understands that it can be hard for patients to come to the clinic for the first time, as many of them have had the same providers for their entire lives, and it can be hard to let go.

 

Lifetime makes this transition a little bit easier by allowing patients to transfer some care to adult providers, while continuing to collaborate with other specialty providers for other aspects for a period.

 

During their first visit to the clinic, patients meet with Lindstrom and her colleagues to discuss transition, and outline the issues that are most important to them. These appointments are conversations, not exams, and take place in a conference room, as opposed to an exam room. The appointment gives patients, and their families, an opportunity to discuss any questions or concerns they may have, and to get a feel for the services available at Lifetime.

 

 

About choices, and coordination

 

Lifetime is focused on specialty medical needs, and is not a primary care facility. Lindstrom offers the following advice to any individuals with disabilities looking for primary care providers:

 

  • Meet with the family Primary Care Provider (PCP) and talk about the potential of becoming a patient. If the doctor already sees the rest of the family, they might be a good start for patients with disabilities as well. She encourages patients to integrate into their family’s practice whenever feasible.

 

  • Arrange an advanced meeting with the PCP and see how accessible the facility is before becoming a patient in the practice.

 

  • If at first you don’t succeed, try try again. Lindstrom cautions that you may not click with the first provider you meet with, but that doesn’t mean you won’t find somebody who works for you.

 

  • Your insurance will affect your options for a PCP, so remember to check first to make sure your preferred provider is covered!

 

Lindstrom also encourages primary care providers to connect with a patient’s specialty care providers. Gillette operates a telehealth triage line for all patients and their providers, regardless of age. If a primary care provider is unsure of how to treat a patient, they can reach out and communicate with other members of the patient’s care team.

 

In addition to medical care, Gillette Lifetime supports patients with the social aspects of transition such as recreation, community integration and helps prepare them for changing relationships with their family and friends, even giving them space to talk about the potential of romantic relationships.

 

Transition is difficult for every young adult, but when you have a disability, you may not know where to go, and you may have a unique set of questions that you feel like no one can answer, which is why transition clinics like Gillette Lifetime’s Transition Clinic are so important.

 

Learning more

 

There are several clinics that specialize in current medical recommendations for young adults with cerebral palsy throughout the country.

 

If you are located outside of Minnesota or the Midwest, and would like to see if there is a transition clinic near you, please be sure to check out our latest guide on healthcare for adults with cerebral palsy and related disabilities for clinics and additional resources that may be helpful in the transition from pediatric to adult health care.

 

Patient with a practitioner at the Lifetime Clinic

WineBev Creating Opportunity to “Work Without Limits”

The Napa Valley is known for gorgeous weather and of course for wine. UCP’s affiliate in the Napa Valley area, UCP of the North Bay, works to bring together the wine industry and individuals with disabilities. WineBev Services began in 2007 and is helping to acknowledge the need for labor in the region, while opening doors for more accessible and competitive employment for people with disabilities. “It was a natural fit given the area,” says Mike Lisenko, President of Business Operations for WineBev.

 

WineBev works with around 15 to 20 wineries in the area at any given time during the season. They currently employ 115 individuals with disabilities, working in all areas – from packing to fulfillment. Potential employees are referred to WineBev from the local regional center in Napa, which helps to pair individuals with providers in the community. Candidates go through a job skills training course before finding the area that best suits their skills. WineBev provides both community-based and supportive employment. They also work with the the hospitality industry in the area, giving greater flexibility to area employers and finding roles that best suit each individual employee’s strengths.

 

WineBev estimates that nearly 200 individuals have come through the program, with several finding employment on their own after their time there. At UCP of the North Bay, living a “life without limits” plays a role in every aspect of life – both work and play. At WineBev, “Work Without Limits” is more than just a tagline – it’s a purpose and flows through every facet of WineBev, from monitoring to packing, to creating employment opportunity for all.

 

Special thanks to Mike Lisenko, President of Business Operations for WineBev.

 

For more information on WineBev, please visit www.winebev.com.

 

To find out more about UCP of the North Bay and their programs, visit their website at http://ucpnb.org/.

 

UCP of Michigan Staff Invited to Attend Meeting Called by The Pope

Special thanks to Glenn Ashley, retired staff from UCP, for his assistance in working to help put this post together. 

UCP of Michigan’s Public Policy Specialist, Barb Valliere, was invited to attend the U.S. Regional Meeting of Popular Movements (RMOPM), which ran from February 16-19 in Modesto, CA.Part of international movements called by the Pope, the meeting in California brought together nearly 700 leaders from clergy members to grassroots leaders to provide input on a variety of social issues, including: job access and inclusion for people with disabilities, environmental issues, and racism. This meeting was the third in a series of international meetings (the previous two were held in Rome and Bolivia) aimed at bringing together members of the clergy and grassroots activists. For Barb, while the journey to California marked her first time on a plane, as Catholic woman with cerebral palsy it was an opportunity she could not pass up.

Ms. Valliere was one of three people invited from the Lansing, MI area to attend the meeting. Her invitation was a result of her leadership and work in community organizing efforts at the state and national levels. Initially, no one from the area was scheduled to speak, however, an issue with accessibility changed all of that. After requesting to be put in an accessible room, Barb was put in a room that was not accessible for her. The conference organizers were able to rectify the problem and accommodate her with another room. RMOPM asked her if she would like to address the entire assembly at dinner about the problem and her experience as person with a disability.


In her remarks to the assembly, she emphasized the importance of civil rights for people with disabilities. Attendees were reminded that when they plan events and invite people, to make sure to take care of their needs and have the event accessible to all, and to not assume that a space is accessible on word alone. She also encouraged other individuals with disabilities to advocate for yourself to ensure that your needs are met. Ms. Valliere made her point in community organizing fashion, encouraging event participants to move deeper into a  discussion on access and issues that affect the disability community.

 

Information for the blog was taken from movimientospopulares.org‘s press release.

Jeffrey Cooper, Recipient of the Kathy O. Maul Leadership Award at 2017 UCP Annual Meeting

Congratulations to Jeffrey Cooper, President, and CEO of UCP of Central Pennsylvania on being named the recipient of the Kathy O. Maul Leadership Award at the 2017 UCP Annual Meeting in Nashville, TN!

Thank you for all of your hard work, leadership, and dedication to individuals with disabilities!

Jeffrey Cooper, President, and CEO of UCP of Cental PA with Interim CEO of the UCP national office, Rick Forkosh.

UCP of Greater Cleveland Client Shines On The Job and Stuns On the Ice

 

Sharita Taylor is a client of UCP of Greater Cleveland. Sharita has autism, and first came to UCP in October 2009 because she was looking for job opportunities when she graduated from high school. Sharita’s story has a little ‘twist.’ When she’s not working, she’s shining on the ice and is heading to Austria for The Special Olympics World Winter Games!

Sharita Taylor on the ice. [Image description: A young African-American woman in her mid-20’s, wearing a yellow and blue dress. She is wearing ice skates and her arms sterched out in a pose.]

Sharita has been a UCP-contract employee at a bank processing center in Cleveland, OH since November 2009. She works in various departments in the bank, such as statement preparation, lockbox department, and image retrieval. Of her job, Sharita says: “I love the atmosphere and I love the people here!” “They make me feel at home. I love my job too! It keeps me up on my feet!” She says her favorite job is delivering documents to other departments as well as meeting and talking to people outside her division. Sharita also enjoys helping the Statement Prep Department with mailings. Sharita says that jumping from job to job is challenging for her, but she just tells herself to focus. Her job has taught her that multitasking can be a positive thing.

While Sharita thrives at her job at the bank, she is also very interested in theater and hopes to one day have a job in that field. She is active in UCP of Greater Cleveland’s Career Exploration Program, which assists clients in exploring a variety of job fields to see where their true passion lies. Sharita also ushers at the Beck Center for the Arts, a local visual and performing arts center.

When Sharita isn’t working or volunteering, she is an accomplished level-five figure skater, along with her twin sister Shaye. They both became involved in figure skating through the local Special Olympics chapter in Ohio. According to the U.S. Figure Skating Association, a level five figure skater has mastered basic figure skating skills such as a beginning spin and a hockey stop. In an interview with ABC News 5 in Cleveland, Sharita was the only athlete from Ohio invited to participate in the World Games. She will be participating in both figure skating and ice dancing in Austria.

 

To find out more about UCP of Greater Cleveland, you can visit their website here.

 

For a schedule of events for the 2017 Special Olympics World Winter Games, click here.

Changing Spaces Aims to Bring Access and Dignity to a Universal Experience

Nobody should have to lay on the floor of a public restroom. While this may seem obvious for some, individuals with disabilities and their families are not always afforded another option. This is because they are frequently faced with bathrooms being unsanitary, cramped, and often inaccessible.

Society has acknowledged the urgency for coat and purse hangers in bathroom stalls to maintain the hygienic safety and convenience for the individual using the restroom, however, often it seems that the same thought has not been considered for some individuals with disabilities. Many times, their caregivers have to change individuals on bathroom floors because there is no other option: the only changing table in most bathrooms is meant for babies. This is not only unhygienic, but also undignified.

Even if toilets are deemed accessible, many times they do not have necessary items for many individuals such as a lift, changing table, or an accessible and supportive toilet. This may fully prevent some caregivers from being able to provide adequate toileting care. Common and important activities such as visiting family or traveling outside the home may become a truly daunting logistical challenge.

Individuals with disabilities and their caregivers are working at the state level in Georgia (Changing Spaces GA), and in other places across the world, to improve public restrooms so that they are accessible and dignified for all methods of toileting. Advocates have two very clear solutions: rather than only having baby-sized changing tables, adult-sized changing tables would be suitable for all age groups. Furthermore, a ceiling hoist would actually reduce the risk of injury when lifting people onto a table, and it does not take up any extra space in the stall (you can view the video from Changing Spaces GA here).

In a society where individuals with disabilities still experience many barriers, being able to change in a toilet stall with dignity should not be another problem that individuals have to face. Changing Spaces is more than a campaign for hygiene, it is about dignity for the individual and those who love them. It is also about providing individuals with disabilities and their caregivers access to a space that has just as much access as for anyone else, allowing them to live life more freely and without barriers; and most importantly, letting them be who they want to be.

To learn more, visit Changing Spaces GA or follow along with the discussion on social media using the hashtag #OFFTHEFLOOR.

Thoughts on the Future of Healthcare

This blog was written from the personal experience of UCP’s Winter Intern surrounding the future of healthcare. This post is intended to express their personal thoughts and experiences. 

On February 7, 2017, I had the opportunity to attend my first press conference as United Cerebral Palsy (UCP)’s programs and development intern. The conference was held by the Committee on Education & The Workforce at the U.S. Capitol. The speakers included several Members of Congress, as well as school nurses and parent advocates. The experience was unforgettable, marking the first time I actually got to witness what goes on behind the scenes of health policy.

As an aspiring primary care physician, health care policy has always meant more to me than simple legislation. When policy changes are made, it directly impacts how doctors can perform their care and how patients can access it. I think it is extremely important that people understand and take charge of their own health, and this is made possible through expansions in health education and health access. Being at the Capitol, and feeling immersed in the actual political process with regards to health, showed me how important it is to continue advocating for these goals– and for my future patients.

One of the stories that particularly touched me at the event was that of parent advocate Anna Crone. She spoke to the room about her daughter who was born with type 1 diabetes. Part of her treatment requires receiving daily insulin injections, and having her finger pricked up to 10 times a day to check her blood glucose levels. In 2012, before the ACA was fully implemented, Crone’s husband had lost his job and was attempting to shop for private insurance. However, he was unable to find anything due to the fact that most insurance companies denied coverage at any cost for those living with pre-existing conditions. He was eventually able to find a job and get back on private insurance, however the family said they felt a significant ease of mind knowing that their daughter would never fully lose coverage thanks to the ACA.

From this story, along with others, I began to truly understand the degree to which the ACA has impacted millions of Americans. As in the case of Anna’s husband, life may get in the way when one least expects it, and it is important to know that you or those you love will still be protected. I am so grateful to have had the opportunity to better understand the complexities of our government; and, I know that this will serve to make me a better health advocate for not only individuals with disabilities, but for all.

Endrew F. v. Douglas County School District: Students With Disabilities and “Meaningful” Education

January 11, 2016 marked a momentous day for individuals with disabilities throughout the United States with the Supreme Court hearing arguments for Endrew v. Douglas County School District. The debate revolves around the interpretation of the 1982 Board of Education of the Hendrick Hudson Central School District v. Rowley case, relating to the Individuals with Disabilities Education Act of 1975 (IDEA).

A family in Colorado and their son Endrew argue that IDEA was intended to provide children with disabilities the access to a meaningful education which also allows for “significant educational progress.” The school district, however, interprets that IDEA has no set standard, and simply ensures that the child receives personalized education which is sufficient (i.e. “merely more than de minimus”). Endrew’s family is concerned that the Douglas County school district did not offer adequate resources for children with disabilities to achieve. After Endrew completed the fourth grade in the Douglas County School District accompanied by his Individualized Educational Plan (IEP), his parents disagreed with the proposed IEP for his fifth year and made the decision to put him in a private school. Endrew and his parents argued that he was not being sufficiently provided a Free and Appropriate Education (FAPE), as mandated by the IDEA, and were seeking reimbursement for the tuition of his private school.

Although Endrew and his family lost this case, over the course of administrative hearings and lower court cases, the family and the school district have been arguing over the measure of “some academic progress” and whether the district must meet a “merely more than de minimus” requirement. The federal government supports Endrew and his parents, drawing on Rowley which indicated that a FAPE must provide meaningful access to education which is much higher than “merely more than de minimus.”

Through the course of the Supreme Court’s oral arguments, Chief Justice John G. Roberts Jr. summarized that the main issue at hand is whether or not IDEA places emphasis on the word “some” or the word “benefit” in the phrase “some benefit”, each resulting in both contrasting and notable meanings that has manifested into the current argument: Providing some benefit would achieve the goals of the school district in distributing education that is merely better than nothing; whereas providing some benefit implies that the education be meaningful and allow for academic progress, which Endrew and his parents seek. Justice Elena Kagan also reminded the school district’s attorney of the precedents set in previous cases in which “some benefit” was repeatedly intended to have “some bite.”

The outcome of the Court’s decision will define the quality of education for students with disabilities for years to come. Those interested in following the case, can find a copy of the transcript from this week’s arguments here. United Cerebral Palsy, along with other organizations, has signed to an amicus brief which can be viewed here. We will continue to monitor this case, and will be interested to see how the Court decides.

UCP Remembers Jack Schillinger

Gloria_Jack

On January 4, 2017, UCP lost a great friend, volunteer, supporter, leader and advisor with the passing of Jack Schillinger at the age of 96. Jack was the “face” of the Bellows Committee that he Chaired until recently, was Chair of the UCP Board of Directors in 1991, and was member of the Finance Committee for many years. In 2015, UCP honored Jack with the Chair Award at the Annual Conference in Chicago.

Jack was a huge part of UCP, since 1955,
and we can never thank him enough for his dedication to UCP and to the lives of people with disabilities.

Our thoughts and prayers are with the family at this difficult time. Jack’s obituary can be found within his guest book. To add a note of sympathy, give your condolences to the family, and to share your memories of Jack, please visit the Guest Book.

UCP and the National Council on Disability – “First Responders and Disability”

On December 9, 2016, UCP and the National Council on Disability joined together to host a day of conversation surrounding first responders and the disability community. Bringing together diverse perspectives from across the country, the day was a raw and honest look at the way law enforcement and other members of the first responder community interact with those living with disabilities.

Watch the footage (captioned) below:

 

View the Program Agenda