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
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.
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.