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

UCP’s Summer Interns Soak In Affiliate Visit

by Kyle Khachadurian, External Affairs Intern, Kaitlyn Meuser, External Affairs Intern and Michael Wothe, Affiliate Services and Public Education Intern at UCP’s National Office

 

outside pathways academy

Recently, we took a trip to UCP of Central Pennsylvania (UCP of CPA) in order to get a taste of what an affiliate does and how it operates. The first thing we noticed is that UCP of CPA is huge! Working in UCP’s national office, we interact with people through referring them to their local UCP affiliates and/or other resources. Seeing, firsthand, an affiliate that treats the slogan “life without limits” in such a direct way refreshed all of us.

 [Left: Staff from UCP National and UCP of Central Pennsylvania at Pathways Academy]

The work going on at UCP of CPA is quite spectacular. We were able to visit several of their departments and programs: Pathways Academy, a residence for adults with disabilities that is fully equipped with SmartHome technology. The SmartHome technology consists of sensors on all of the windows, doors, and even chairs and beds to let the house staff know if any of the residents may have left and need assistance. 

interacting CACC kids 2

[Right: Interacting with children at the Capital Area Children’s Center]

Our next stop was at their Capital Area Children’s Center, which is a preschool for young children, ages six weeks to five years old, with and without disabilities. The school has 75% of its students without disabilities and 25% with a range of disabilities. Aside from various therapies, which happen in the classroom, the children with disabilities are taught the same things, at the same pace, as the children without disabilities– and it works. When we visited, a 4-year-old girl came up to us and said hello. She started telling us how she was graduating the following day. We later learned she was non-verbal when she began school there! It was absolutely incredible to be able to see the “real world” results from the programs at UCP of CPA.

The last stop on our UCP of CPA journey was at their Assistive Technology/Changing Hands Center. There, we seemingly saw every kind of assistive technology you could possibly think of, and several that you’d never think of, such as a button shaped like a face. There was also a pile of board games that were all in braille. After that, we saw the Changing Hands Center that was a sort of “exchange” for mobility aids and devices. If someone needs a type of device, he or she calls and asks for it. If UCP of CPA has one available, the device gets cleaned, and the person comes to pick it up free of charge. You can also donate old equipment that you no longer need to the Changing Hands Center.

AT includees games

[Left: Checking out board games in braille]

The striking thing about the work this UCP affiliate is doing is that their passion for what they are doing is apparent and absolutely infectious. It was great to see the positive impact technology can have on the lives of individuals with various disabilities, as well as the positive impact that early intervention and inclusion can have on young children — seen from the bright, smiling faces of the kids enrolled at UCP of CPA’s Children’s Center. Nearly all of the staff we met has a connection with cerebral palsy or other disabilities, be it a family member, friend or loved one. They treated us like we belonged there, and we truly felt welcomed. UCP of CPA is a shining example of the great work UCP affiliates are doing across the United States, in Canada, and Australia!

 

LEADING CHILDREN’S HOSPITAL JOINS UCP AS FIRST AFFILIATE OF ITS KIND IN THE NATION

FOR IMMEDIATE RELEASE

CONTACTS:
Michael Hill, Senior Vice President of External Affairs
United Cerebral Palsy
202-973-7144, 202-431-3513 (cell), mhill@ucp.org

Patty Dunn, Public Relations Manager
Gillette Children’s Specialty Healthcare
651-229-1753, 651-245-8489 (cell), Patty.Dunn@gillettechildrens.com

 

LEADING CHILDREN’S HOSPITAL JOINS UCP AS FIRST AFFILIATE OF ITS KIND IN THE NATION

 

Gillette Children’s Specialty Healthcare expands network in Minnesota, beyond

Washington, DC –  (August 29, 2012) – Gillette Children’s Specialty Healthcare (Gillette) joins United Cerebral Palsy (UCP) as its newest affiliate and the first children’s hospital to join the UCP network in the organization’s 64-year history, the organizations announced today. UCP’s Board of Trustees voted unanimously to welcome Gillette as UCP of Minnesota during a special meeting on Tuesday, August 14, 2012. This makes UCP and its affiliate network nearly a $1 billion enterprise devoted to educating, advocating for and providing support services to people who have a spectrum of disabilities.

Gillette is internationally recognized for its work in treating children who have disabilities and complex medical conditions. Its Center for Cerebral Palsy is world renowned for its medical treatment and rehabilitation services dedicated to reducing the effects of cerebral palsy through an interdisciplinary team. The hospital was cited by the 2012 US News & World Report as one of the country’s best children’s hospitals in the areas of orthopedics and neurology/neurosurgery. Gillette serves approximately 4,000 children each year with CP at its main campus in St. Paul, Minnesota and at clinics throughout the state. Click here to download a fact sheet with additional information about Gillette.

“We are thrilled to welcome Gillette to the UCP family,” said Stephen Bennett, president & chief executive officer of UCP. “The partnership with Gillette marks a new approach by UCP to expand our network in new and exciting ways. Gillette’s mission mirrors that of UCP, with a broad commitment to people with a spectrum of disabilities. Their reach, reputation and dedicated and accomplished team adds vast new resources to the UCP network, and we are excited for a strong partnership in the years to come.”

”As a national leader in specialty health care, Gillette is always looking to build partnerships with organizations who provide support to children who have disabilities and their families,” said Margaret Perryman, president and CEO of Gillette. “By becoming an affiliate of UCP, we will now be able to provide our patients with even more valuable resources.”

UCP is comprised of close to 90 affiliates throughout the globe that provide services such as housing, physical therapy, assistive technology training, early intervention services, individual and family support, social and recreational programs, community living, state and local referrals, employment, employment assistance and advocacy.  Gillette joins UCP as the first hospital center and points to UCP’s efforts to expand its reach through creative partnerships with organizations that provide excellence in service to people with disabilities.

“This is an important day for UCP,” Bennett said. “Just as parents in the 1940s founded UCP as a response to wanting better for their children, UCP is excited to announce a partnership that expands its reach to help even more people under the UCP banner.”

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About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

About Gillette Children’s Specialty Healthcare
Gillette is an independent, not-for-profit hospital and clinics, that is internationally recognized for its work in the diagnosis and treatment of children and young adults who have disabilities or complex medical needs. As, the nation’s first hospital devoted to the treatment of children with disabilities, Gillette’s mission is to help children, adults and their families improve their health, achieve greater well-being, and enjoy life. In a nationwide survey by U.S. News Media Group this year, Gillette ranked 12th in pediatric orthopedics and 39th in pediatric neurology/neurosurgery, an increase over our 2011 national rankings.