October 2015 | Links updated, June 2016
This resource is part of the series Getting Ready for When Your Teen Reaches the Age of Majority: A Parent’s Guide.
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.
- The Importance of Starting Early
- Areas of Healthcare to Consider
- Strategies for Providing Support
- What About Guardianship?
- Helpful Resources
- Materials Used in Developing This Tip Sheet
- Other Tip Sheets in This Series
- Acknowledgements, with Many Thanks!
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 the biggest 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).
Let the young person gain experience in talking to medical professionals, starting when he or she goes to the pediatrician as a child.
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
National Guardianship Association
National Health Care Transition Center
See in particular:
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 prepared for 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.
Transition Health Care Checklist: Preparing for Life as an Adult | The Transition to Health Care Checklist is intended for youth and young adults who are preparing for the transition to life as an adult. The booklet provides a general overview of the knowledge, skills, and actions that need to be addressed as part of the fluid process of adolescent transition for youth with special health care needs.
http://www.waisman.wisc.edu/wrc/pdf/pubs/THCL.pdf (616 kb)
National Resource Center for Supported Decision-Making | The NRC-SDM provides leadership and expertise in supported decision-making, representing the interests of and receiving input from thousands of older adults and people with intellectual and developmental disabilities. The Center has applied supported decision-making in groundbreaking legal cases; developed evidence-based outcome measures; successfully advocated for changes in law, policy, and practice to increase self-determination; and shown that supported decision-making is a valid, less-restrictive alternative to guardianship.
Kids as Self Advocates (KASA) | KASA is a national, grassroots project created by youth with disabilities for youth. This webpage has real life stories told by youth and young adults with disabilities and links to other organizations and agencies that can give you information about health.
Health Vault | Health Vault is a free online tool where people can store health and medical information, track their exercise and health conditions, and control their own level of privacy.
Collaborative Care Notebook | From Utah Family Voices, this care notebook is designed to help families and young adults organize health information and forms in one centralized place. The notebook’s available in PDF and in Word, making it easy for users to edit and update their information. Available in English and Spanish. http://www.utahfamilyvoices.org/familys-coordinating-care/
Build Your Own Care Notebook | Similar to the resource above, the Care Organizer is an organizing tool for families and youth with disabilities and will help both keep track of important health-related information. Care notebooks are very personal and ideally should be customized to reflect your son or daughter’s medical history and current information. Developed by the National Center for Medical Home Implementation.
Materials Used in the Development of This Tip Sheet
Millar, D. S. (2003). Age of majority, transfer of rights and guardianship: Considerations for families and educators. Education and Training in Developmental Disabilities, 38, 378-397.
Millar, D. S. (2013). Guardianship alternatives: Their use affirms self-determination of individuals with intellectual disabilities. Education and Training in Autism and Developmental Disabilities, 48, 291-305.
Millar, D. S. (2014). Addition to transition assessment resources: A template for determining the use of guardianship alternatives for students who have intellectual disability. Education and Training in Autism and Developmental Disabilities, 49, 171-188.
North Dakota Department of Human Services. (2008). Guardianship handbook: A guide for court-appointed guardians in North Dakota. Bismarck, ND: Author.
http://www.pathfinder-nd.org/pdf/guardianship-handbook-12-18-08.pdf (94 kb)
Rhode Island Disability Law Center. (2008). Guardianship and alternatives to guardianship. Providence, RI: Author. Online at: http://www.ridlc.org/publications/Guardianship_and_Alternatives_To_Guardianship_Booklet.pdf (224 kb)
Virginia Intercommunity Transition Council. (n.d.). Supported decision making. Online at: http://www.doe.virginia.gov/special_ed/transition_svcs/va_intercommunity_transition_council/fact_sheets/supported_decision_making.pdf (224 kb)
Other Tip Sheets in This Series
This tip sheet is part of a series written to support parents and youth with disabilities as youth approach the “age of majority.” The series includes:
- Getting Ready for When Your Teen Reaches the Age of Majority: A Parent’s Guide
- Getting Ready for Healthcare at the Age of Majority (this tip sheet)
- Getting Ready for Managing Finances at the Age of Majority
- Getting Ready for Independent Living at the Age of Majority
These tip sheets are copyright free, so please do feel free to share them with others.
Acknowledgements, with Many Thanks!
Collaborating partners | This tip sheet was developed in collaboration between the:
- National Secondary Transition Technical Assistance Center (NSTTAC)
- National Post-School Outcomes Center (NPSO)
- Center for Parent Information and Resources (CPIR)
Thanks to reviewers | We extend our appreciation to the many stakeholders (e.g., parents, students, SEAs, LEAs) for their generous ideas, support, and time in the development of these tools.
Special thanks to Parent Center reviewers | Special thanks goes out to Barb Buswell, Bebe Bode, Laura Nata, and Dorie France for providing guidance throughout the project. Without their contributions, these fact sheets would not have been possible. Thank you.
Cooperative agreement references | This document was developed by the:
- National Post-School Outcomes Center, Eugene, Oregon (funded by Cooperative Agreement Number H326U090001) with the U.S. Department of Education, Office of Special Education and Rehabilitative Services;
- National Secondary Transition Technical Assistance Center, Charlotte, NC (funded by Cooperative Agreement Number H326J11001) with the U.S. Department of Education; and
- Center for Parent Information and Resources, Newark, NJ (funded by Cooperative Agreement Number H328R130014) with the U. S. Department of Education.
OSEP Project Officers | Carmen Sánchez and Dr. Selete Avoke
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