Roadmap to the future - Transitioning into Adulthood with ASD
Preparing Individuals with Autism Spectrum Disorders (ASD) for Adulthood
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What is Medical Transition? | Ages in Medical Transition | What is a Medical Home | Health Insurance | Considering Guardianship | Emergency Preparedness

What is Medical Transition?

alt=""Medical transition happens when an individual moves from pediatric to adult health care. Medical transition is important because it helps you to take control of another part of your life, your health care, and become more self-determined. It helps you understand the adult health care system before you get there. Transitioning into adult health care from pediatric health care also helps in understanding what you might need to have in place for health insurance when you are an adult.

 

Important Ages in Medical Transitionalt=""

  • Age 18, Missouri legal adulthood begins
  • Before age 18, begin checking into Supplemental Security Income (SSI) eligibility
  • Between ages 12 and 18 look for adult health care, depending on status as a dependent
  • Between 18 and 25, finalize adult health care
  • Prior to turning 18, families need to consider guardianship (do link to guardianship) and alternatives

To stress the importance of medical transition, the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) provides the following information:

  • Less than half of youth with special health care needs in the US receive the services necessary to make transitions to adult health care, work, and independence.

  • Slightly more than a quarter of parents whose youth have a special need indicate that they don’t have discussions about transition to adult health care with their teen’s health care provider.

  • Parents also report that their teen’s health care provider does not typically encourage the youth to take increased responsibility for their care.  

A good way to begin the transition to adult health care is to start slow, start small, but start now. Download a pdf about medical transition by the Missouri Developmental Disability Resource Center/Family-to-Family Health Information Center. Everyone has an important role during medical transition.

YOUTH

PARENT

PARENTS & YOUTH

PHYSICIANS

Understand health care needs

Find out about insurance options

Develop a health record

Continue to manage health care needs

Help schedule appointments and use a calendar

Know when your child will age  out of your current insurance plan

Teach healthy lifestyle

Encourage youth to co-sign and to be part of the health care process

Learn about and manage  medications

Organize medical papers

Make a 5-year plan for health care

Help youth to understand what physicians and medical staff do

Talk to the doctor about symptoms and questions

Teach your child to manage their medications

Talk about how a special health care need affects ability to meet goals and plan to overcome barriers

Encourage families to interview and visit adult physicians to transfer care

Talk about what you want to do in the future

Support and encourage your child to talk to the doctor

Discuss how to pay for health care

Provide health record to new provider and give youth a 1-2 page summary

From: Missouri Disability Resource Center, WWW.MOFAMILYTOFAMILY.ORG

To learn more about how to advocate for your health, see Being a Healthy Adult: How to Advocate for Your Health and Health Care by Kathy Roberson, M.S.W. at The Elizabeth M. Boggs Center.

What is a Medical Home?

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Today primary health care is focused on providing a family-centered medical home for patients. A medical home begins while a child with special needs is receiving pediatric care, but should continue as they move into adult care. No matter what the age, the best health care is achieved when a patient receives medically and developmentally appropriate care. A medical home is not a building, house or hospital. It is a way to partner with the child’s family and the child to assure that all of the medical and non-medical needs of the child are being met. By partnering with the patient and their family, the care team can help the patient to get specialty care, educational services, out-of-home care and community services that are important for good health. Successful transition from pediatric to adult care involves the participation of the medical home team (physicians, nurse practitioners, nurses, the family and other care givers) along with the youth to create a plan. The receiving adult medical care provider needs to beincluded to provide support during the transition process.

To learn more about transition from pediatric to adult care download the Clinical Report—Supporting the Health CareTransition From Adolescence to Adulthood in the Medical Home and read the Getting Ready for Transition section.

What Do I Need to Know about Health Insurance?

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It is important to know about health insurance. Health insurance can help pay for medical care. It is important to think about health insurance before a teen turns 19 or lives on their own. If you don’t have health insurance you can get health care at a federally qualified health center or you may qualify for public health insurance such as Medicaid/MO HealthNet. Click here for more information on public or private health insurance, and the Insurance Consumer Hotline.

Protections under The Affordable Health Care Act went into effect on September 23, 2010. Among a series of several new protections and benefits in the law is the fact that you can now most likely add or keep your children on your health insurance policy until they turn 26 years old if they don’t have coverage on a job.

Considering Guardianship and Power of Attorney

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Being assured that your family member is protected from making decisions that can hurt them or that they will receive assistance for health care issues, prompts families to consider guardianship or its alternatives.  There is often an assumption that someone with a special health care need or developmental disability will need to have a guardian when they are an adult (age 18 in Missouri). This isn’t necessarily the case. Many people with special needs are able to make their own decisions and be in charge of their lives, but the key is to have the right support.

Deciding what will work best in your situation can be difficult, so it is important to understand all of your options. Ask yourself this question. “Will having guardianship solve my concerns?” Keep in mind that guardianship takes away fundamental rights, such as:

  • the right to vote
  • the right to get a driver’s license
  • the right to enter into contracts including marriage, owning a home, or making decisions about medical care, etc.

Guardianship should only be considered when a person can’t make informed decisions, even when provided accommodations or supports. There are other options that may not take away the person’s rights, but still provide the necessary protections and supports. You may want to consider limited guardianship, conservatorship, or power of attorney (general or health care). The UMKC-Institute for Human Development has developed a resource guide in collaboration with Missouri Protection and Advocacy and People First of Missouri for your reference. A tool is provided in the guide to help you make the decision about guardianship.

Emergency Preparedness

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Everyone needs to be prepared in the case of emergencies or natural disasters. There are key things that families can do to help their family member who has ASD know what to do in these cases.

  • Youth should receive safety instruction for using tools, equipment and other items that can lead to danger. Since individuals who have autism often have difficulty with abstract thinking and problem solving, they must be taught safety in order to prevent being a danger to themselves or others.

    • Kitchen safety is an example. Individuals who can cook need to learn safe use of the stove, oven and other appliances. Since some individuals with ASD have a tendency toward ritualistic behavior such as lining up items, there is an obvious danger if they were to line up all of the stove knobs to the on position. Using electric tools and appliances to keep them out of water is another example. Knowing what to do in the case of flooding or a power outage is also important.

    • If the individual becomes ill or has an accident, he or she needs to know who to contact. He or she needs to be taught to dial 911 and how to report an emergency.

  • Developing an emergency care plan is important. Having a plan available will provide assurance that family members, caregivers, and emergency medical services (EMS) providers will have the information they need to provide care during an emergency. It will also be a resource for other medical personnel.
    • The Missouri Family to Family Disability and Health Information Center, UMKC Institute for Human Development, has developed Partnering with your EMS, a resource for partnering with your emergency medical services (EMS) providers in your community.

    • There are also other resources for emergency and disaster preparedness on the Emergency Disaster and Safety Planning page.

  • Partnering with law enforcement is another key thing to do in planning for emergencies and disasters. For additional information and resources about risk and safety management for people who have ASD. Individuals with developmental disabilities are seven times more likely to come in contact with law enforcement and these encounters may not always be socially appropriate.
    • Learning to recognize that men and women in uniform are people you can go to and stay with during an emergency is an important lesson for adolescents to learn. Individuals who have autism can learn these lessons when we teach these safety skills at home, at school and practice them in the community. Teaching safety skills can be done as part of the daily routine. View resources for teaching these skills and for preparing for emergencies at the Autism and Risk Management site by Dennis Debbaudt.

 

Where do I start?
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Transition Roadmap
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mu logoThompson Center for Autism and Neurodevelopmental Disorders, University of Missouri 205 Portland Street Columbia, Mo. 65211 | Phone: 573-882-6081 | E-mail: thompsoncenter@missouri.edu Copyright © 2011 — Curators of the University of Missouri. All rights reserved. DMCA and other copyright information. An equal opportunity/affirmative action institution. Last updated: May 19, 2011