While “Primary Steps” articles are often written for primary care providers, some subjects are equally valuable to patients, their families and their speciality providers. Moving from a pediatric care provider to an adult care provider is likely to be very challenging for many patients – particularly those with special needs. Youth with neurologic conditions and their families often feel discouraged to work on long-term health care plans and experience anger at the limitations imposed by their diagnosis. Many patients with neurological disorders may have developmental delays, intellectual disabilities or cognitive impairments that prevent them from being completely independent in adulthood. While this specific population will experience additional difficulties with transition to adult care, they should not be excluded from the process. Starting the transition process early is important for success and often requires multiple steps facilitated through a collaborative team effort.
When should the transition process begin?
The concept of transfer of care should be introduced by the patient’s neurologist, no later than age 14-15 years. Early discussion permits adequate time to meet transition goals over the next few years, which may include self-management, self-advocacy skills, increasing independence or autonomy and becoming more familiar with managing medical care. A slow shift in responsibility from the doctor to the patient or family is highly suggested. Early discussion is essential, specifically if legal paperwork may be recommended or required before the patient turns 18. In cases where the patient’s legal competency (i.e. cognitive ability to make decisions) is unclear, the child may be referred to neuropsychology for testing. It is also important to be aware of the clinic or agency’s policy on transition. At Cook Children’s, we share brochures and handouts such as “Preparing for Adult Care”, which describe the transition process at our facility. Our Neurology clinic typically continues to care for patients up to age 18-21 years depending on the patient’s complexity, treatment plan, medical goals and availability of qualified adult providers.
What types of legal considerations may be needed prior to transition?
Typically parents make all the medical, financial and educational decisions for their children, but when a child turns 18 the law allows them to make their own decisions. We recommend parents consider whether a patient at age 18 has the intellectual abilities to consent to their medical treatment and make financial decisions or if a legal arrangement may be needed. For patients with severe cognitive impairments or intellectual disability, legal guardianship is suggested. This process can be very complicated, expensive and time consuming. In Texas, the Guardianship process includes:
- Filing an application with probate court based on patient’s county.
- Scheduling a hearing before judge.
- Having a judge appoint a guardian. (Guardianship is a legal process in which the court provides one person the legal authority to make medical or financial decisions for an individual who cannot make such decisions for themselves.)
There are some alternatives to guardianship such as Medical Power of Attorney (MPOA) and Supported Decision Making Agreement (SDMA). MPOA is a document that an adult patient can sign to allow the parent to make medical decisions on their behalf in case they become unable to do so. SDMA allows an individual to make their own decisions while receiving any support they need to do so. Basically, this means a person with disabilities may choose someone they trust as their supporter. Cook Children’s Neurosciences social workers educate families on these various legal options, but for the best legal advice we strongly encourage parents to consult with their family attorney. Patients and their families should consult an attorney or financial advisor to determine what is the best for their specific situation.
What assistance is available to prepare for transition to adult care?
Cook Children’s Neurosciences Center social workers support young adults with disabilities and special health care needs as they transition to adulthood. They assist them in navigating the legal system for incapacitated persons, educate families about legal paperwork and provide community legal aid resources designed for people with low income or those who cannot pay for legal fees. Social workers also help patients with educational and vocational training, community support services, health insurance options and medicaid waiver programs. They can also assist with disability benefits as an adult, health insurance options, driving evaluations and mental health referrals.
The State of Texas has seven Medicaid waiver programs which provide long-term services for children and adults with disabilities and special health care needs. Some of the services include: group home support, home modifications, respite care, nursing care, personal therapies, adaptive aids, durable medical equipment needs, case management and most importantly access to Medicaid Health insurance after patients turn 21. Long term services are vital elements of supporting the patient’s independence and maximizing their ability to successfully transition to adult care. We encourage families to add their children to the Medicaid waiver interest list, or commonly called “waiting list,” early as some of the programs may have a wait list longer than 14 years.
What online resources are available to assist with the transition process?
To support health care providers with the transition process, websites such as gottransition.org and childneurologyfoundation.org provide numerous links to resources and ideas on how health care providers can effectively transition their patients. The latter outlines basic steps required for successful transition of patients with neurological conditions specifically. NavigateLifeTexas.org is another website specifically designed for individuals with disabilities and special healthcare needs who live in Texas. It provides information on how to prepare for transition and has detailed legal options including guardianship for age 18 years and beyond. This website can be used for ongoing support and services for patients with neurological disorders and their families.
What are some barriers to a smooth transition process?
The availability of health insurance and qualified specialists remains a major barrier. It is often extremely difficult to find an adult care provider that feels comfortable treating someone with multiple neurological conditions and even more difficult when the diagnosis is a rare disorder which requires specialized expertise. For these patients, finding a provider knowledgeable of their disorder is paramount to continued successful treatment. Many children with special needs are covered by Medicaid which can make finding qualified adult providers even more difficult, since many are not contracted with Medicaid Plans. If there is an issue with locating an adult care provider, we suggest families voice their concerns to their insurance plans. Provider Relations departments within a patient’s insurance plan can create a “single case agreement” for an adult care provider that might be close to the patient’s home and is currently out of network. In addition, Cook Children’s Neurosciences Center has partnered with several adult providers within our area to create transitional clinics for some of our most common diagnoses, such as epilepsy, to assist in a smooth transition process.
The participation of the entire medical team, including physician, nurses, dietitians, social workers, coordinators and other support staff is necessary in preparing for the future. The phrase “It takes a village to raise the child” continues to be applied in the health care system when we think of transition of care from pediatrics to adulthood. Understanding the process, the available resources and getting started early are essential to a smooth transition which will continue to provide quality medical care in adulthood.
Samanta Juric, Paige Mauch
Cook Children’s Neurosciences Social Work
Cook Children’s Neurosciences team
Great outcomes begin with great input. Having a medical system where every department, doctor, and care team member works together means that your child can have quick access to testing, diagnosis and treatment, and that means better outcomes now and in the future.
Contact the Jane and John Justin Neuroscience Center at Cook Children’s with your questions at 682-885-2500.