Family Voices Indiana is a family-led organization that provides information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them.
Thursday, March 10, 2016
Getting Ready for Healthcare at the Age of Majority
When young people with disabilities reach the “age of majority,” they gain the right to manage their own affairs, including choosing their own doctor and seeing to their own healthcare needs. In most states, this happens at age 18. Legally considered as adults, they may take charge of healthcare decisions large and small. But will they be ready to make such decisions for themselves? Will they have the skills and basic information they need?
This tip sheet considers steps that you (as parents) and others (such as teachers or transition specialists) can take to help your teenager with disabilities learn what’s involved in taking care of one’s own health and healthcare as an adult.
Developed by: National Secondary Transition Technical Assistance Center (NSTTAC) National Post-School Outcomes Center (NPSO)
In collaboration with: Center for Parent Information and Resources (CPIR) ________________________
The Importance of Starting Early
Staying healthy and making sound decisions about one’s own healthcare involves many skills. Starting with the most basic, it’s about:
handling cuts and bruises,
taking medicine as prescribed,
regularly visiting the doctor, and
knowing when (and whom) to call for medical help.
These are skills most of us learn over time at home and at school. They provide the foundation for future learning about what it takes to see to our own physical and emotional well-being when we’re adults.
For many young people with disabilities, healthcare issues are a challenge. For some, especially those with special health care needs, healthcare can be thebiggest challenge. That’s why it’s important to start early and help young people develop the skills they will need to take charge of their own health and healthcare. Fortunately, there are many tools available that schools and families can use to help young people learn about healthcare and what’s involved in managing their own (see the list of Helpful Resources at the end of this tip sheet). Also:
You can use the IEP meeting to advocate that your child’s IEP include goals focused on health issues, especially if he or she has special health care needs.
Practice the skills at home, too, so that your son or daughter learns over time how to maintain good health generally and about his or her health issues in particular.
All this lays the foundation for later, when your child becomes a youth, then a young adult, then an adult who’s as independent as he or she can be.
Areas of Healthcare to Consider
Think about the decisions your child may face and the skills necessary to take care of one’s health. Listed below are some common health-related activities that adults engage in.
Contacting appropriate medical personnel in the event of illness or medical emergencies
Choosing and interacting with medical professionals (e.g., choosing a doctor; knowing when to provide, withhold, or withdraw medical consent)
Scheduling appointments with medical professionals
Making informed decisions about treatment options (e.g., understanding the benefits and risks of treatment options and making a responsible choice)
Managing over-the-counter and prescribed medications
Knowing when to call in prescription refills, pick up prescriptions, and contact the doctor to get prescriptions renewed
Following medical and therapeutic treatments
Maintaining medical records (e.g., requesting records, providing authorization for people to access them)
Interacting with insurance companies
Strategies for Providing Support
Now consider how to support your son or daughter (or student) in carrying out these common healthcare activities, now and in the future. Suggestions include:
Use collaborative decision making. Provide the young person with information on critical healthcare decisions, considerations, risk factors, and choices (e.g., IEP goals to learn specific decision-making skills, courses on self-determination, use of life-skills curriculum).
Understand the importance of having an informal network of friends and family. Often the personal network is sufficient to provide the supports and assistance that the young adult needs. Rely on your network whenever possible.
Use technology (e.g., apps, smart phones, tablets) to support the young person in becoming and remaining independent (e.g., timers to remind when to take medication).
Use in-home care services (e.g., nurse, therapist, dietician) to provide support, ensure that medications are taken as prescribed, and that other medical needs are addressed (e.g., diabetes monitoring).
Provide needed therapy in the home (e.g., physical, occupational, speech therapy).
Use case management services to coordinate services across agencies with the aim of ensuring that the individual with a disability remains as self-sufficient as possible. Case management services may be provided by the department of human services, community mental health, or other organizations (e.g., vocational rehabilitation, advocacy organizations).
Consider using prescription delivery from community agency services to deliver prescription medications directly to the home.
Use home visit services/daily call services by having volunteers make home visits (e.g., to provide social contact, to observe how the person is faring, to obtain help if needed).
Use medical release forms (71 kb) to authorize the extent to which private medical records can be shared and with whom. Release forms do not allow others to consent on behalf of your son or daughter for actual health or medical care, and the authorization can be revoked at any time. These could be used to support collaborative decision making.
Involve agencies that offer habilitative services to increase the skills of your young person with disabilities. These services could be used to provide training on many of the areas above (e.g., selecting a physician, managing medications).
Set in place a living will/healthcare directive specifying the type of medical treatment your son or daughter wishes (or does not wish) to receive in the event that he or she is unable to communicate that information in the moment.
Appoint a surrogate decision maker in situations when a directive is not in place, and the young adult with a disability is not able to provide informed consent for medical treatment.
Use a medical power of attorney (250 kb) by having the young person provide authorization for another competent adult to also make medical decisions on his or her behalf. This does not require a court process and can be revoked at any time by the individual.
What About Guardianship?
Some parents may consider taking guardianship of their son or daughter as a way of protecting their child’s well-being. Assuming guardianship of your son or daughter is one option for protecting his or her day-to-day safety and well-being in the future. Depending on the severity or nature of your youth’s disability, it may be an option worth exploring.
However, be aware that guardianship is one of the most legally restrictive forms of support. It can also have negative effects on the individual. For instance, when a youth is denied the opportunity to make healthcare decisions or to participate in a shared decision-making process, he or she is also denied the opportunity to develop those skills. This lack of opportunity may lead to a perceived “incapacity” either by the family or by the young adult. Therefore, it is important to realize that many young people with disabilities can be adequately supported in adult life without a guardian.
Given that, consider what’s involved in taking good care of oneself and in managing one’s own healthcare. What will it involve for your son or daughter when he or she reaches the age of majority? Where will the challenges be? Where will supports be needed? The answers to these questions will let you know the supports to put in place for your son or daughter in adulthood. We’ve already mentioned quite a few of the possible supports you might explore.
To Learn More about the Pros and Cons of Guardianship
When a young adult with disabilities reaches the age of majority, he or she has the right to assume responsibility of his or her own healthcare. The issue then becomes whether young adults with disabilities are preparedfor such responsibility.
This tip sheet highlights the importance of starting early to help your son or daughter learn health-related skills, including providing opportunities for your young person to talk to medical professionals and practice making decisions about his or her own healthcare. Build a strong system of support that your son or daughter can turn to for advice and assistance, and take advantage of the power of technology and the availability of services that can be provided in the home, such as needed therapies and medical call-in or nursing services.