Adapted Abstract

Background and Aims: These articles describe the Fearless, tearless transition model for autistic adolescents with dual disabilities.

Methods and Results: In the first study, 18 caregivers and 1 young autistic adult completed a survey, and 62 healthcare stakeholders were interviewed to understand the barriers to healthcare transition. The Fearless, Tearless Transition model was created to address the barriers identified. The model includes a transition manager, clinical assessments of needs, shared care between pediatrician and adult providers and adult providers education to develop expertise. In the second study, 22 caregivers of autistic adolescents with dual disabilities completed a survey before and at least 6 months after receiving the transition support. Preparedness for transition was significantly improved and 67% found the program useful. There was no change in confidence to transition or in caregiver’s stress. The areas of need most improved after the transition were self-care and home and family life while no change was reported in sexual health concerns.

Conclusions and Implications: A transition model that includes a transition manager and communication between pediatric and adult providers has the potential to support the healthcare transition of autistic youth.

Findings

• Preparedness for transition was significantly improved.
• There was no change in confidence to transition or in caregiver’s stress.
• Satisfaction with the program: 67% reported the transition service was useful.
• Self-care, home and family life, lifestyle and funding were the most improved areas of concern.
• Sexual health, friends and activities, and mental health show little to no improvement.

Summary

This summary includes 2 studies on the development and on the evaluation of the Fearless, Tearless Transition model. The Barriers to the healthcare transition identified in the first study included anxiety of caregivers due to difference between pediatric and adult care, variability in transition planning, lack of communication in the healthcare system, and lack of capacity and expertise in adult providers to care for autistic young adults with dual disability. Dual disabilities are defined by having an intellectual disability and/or autism spectrum disorder (ASD) and co-existing mental health disorders like anxiety disorder or depression.

The Fearless, Tearless Transition model aims to improve caregivers’ satisfaction, reduce anxiety regarding transition, and improve communication between providers during the transition period. The model includes a transition manager, an assessment of needs completed by the pediatrician, shared care and communication between pediatrician and adult providers and education to develop adult providers’ expertise.

The model includes pediatricians who start talking about transition of care at the age of 12.  Between the ages of 15 and 18, Autistic youth attend a transition visit. Their needs are assessed by the pediatrician together with the transition manager. The assessment tools include (1) Modified Health of the Nations Outcomes Scale—Learning Disability (M-HoNOS-LD), (2) Modified Supervision Rating Scale (M-SRS), (3) 12-year-old checklist and (4) Autism Parenting Stress Index (APSI). A transition plan is created based on the assessment results. The Autistic youth alternates visits between the pediatrician and the general adult provider until transition is completed.

The second study is based on surveys of 22 caregivers completed before and at least 6 months after receiving the transition support. This model was rated as somewhat useful or useful by 67% of caregivers. They felt significantly more prepared for transition after the intervention. There was no significant change in confidence to transition or in caregivers’ stress. Areas of concerns improved compared to the initial survey were self-care, home and family life, lifestyle, and funding. There was little to no change in sexual health. Areas of concerns including friends and activities and emotional health showed less than 10% improvement.

Real-World Implications

A transition model that includes a transition manager, needs assessment, communication between pediatric and adult providers and provider education has the potential to support the healthcare transition of autistic youth. Additional support addressing specific areas of sexual health, friends and activities and emotional and mental health is needed.

Limitations

• The studies include a small number of participants.
• Non-English-speaking patients were excluded from the study and may experience greater barriers to transition.
• There is no measure of the Autistic young adult’s or provider’s perspective of the impact of the transition model.

A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z

A

Accessible: When people with disabilities can easily use something. A setting or communication must work as well for people with disabilities as it does for everyone else.

Accessibility: What makes it easy for people with disabilities to obtain, understand or use.

Adolescence: Is from 10 to 19 years old. It is the time when a person is growing to become an adult.

Adolescent: A person who is 10 to 19 years old.

Adult Independence: An adult with disabilities is free to make their own day-to-day choices. For example: how to live, work, and take part in their communities.

Adult resources: Information and supports for adults.

Advocate (to): To speak up and make a case for what you need.

Affirmative Resources: Supports that are respectful and welcome a person the way they are.

Aggressive Behaviors: Words or actions that may hurt someone

Anxiety: Intense feelings of worry and fear.

ASAN: The Autistic Self-Advocacy Network is an organization run for and by autistic people.

Attention Deficit Hyperactivity Disorder (ADHD): A condition where someone:

• finds it hard to pay attention

• may act without thinking

• and needs to move a lot

Augmentative Alternative Communication (AAC): Ways, besides talking, that people show others what they want and need. This includes writing, pointing at pictures, typing, using signs, etc.

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B

Behavioral Therapy:  Therapy to change unhealthy or harmful ways people act.

Behavior Treatments: (See Behavior Therapy)

Bi-Polar Disorder: A disorder where someone’s mood changes between highs and lows.

Blood Draws: Inserting a needle into a vein to collect a blood sample for testing.

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C

Capitated: Paying an amount of money based on how many patients are seen at a doctor’s office.

Caregiver: Someone who helps a person with everyday activities.

Case Management: Someone who helps make sure your services and supports work for you.

Community Programs: Activities or supports provided in your town in the same places as people without disabilities.

Community Resource Guide: A list of support services and resources in a local area.

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D

Depression: Feelings of sadness or lack of interest in activities you once found enjoyable. It can change how much you sleep or eat.

Developmental disability services: Supports and programs for persons who are disabled before the age of 18.

Dietician: A healthcare professional who helps people eat healthy.

Dual Disability: Having more than one disability.

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E

Executive functioning: How your brain works to focus, make a plan, remember and do more than one thing at the same time.

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F

Funding: Money from an organization or government.

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G

Gastro-intestinal: The many different parts of your body that food and liquid go through. For example: your mouth, stomach, or anus.

Government Policy-Makers: People in government who make rules and laws.

Guardianship: Guardianship is a legal word. Guardianship is when a court decides that a person cannot make their own decisions. The court then appoints someone else to make decisions for the person.

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H

Healthcare professionals: People trained to provide healthcare. This includes doctors, nurses, therapists, etc.

Healthcare providers: People or places that provide healthcare. This includes doctors, nurses or hospitals.

Healthcare transition: When teenagers start making their own healthcare decisions as they become adults. They may change to a new doctor for adults.

Healthcare transition supports: Ways to make healthcare transition easier for teenagers and their parents.

Health Maintenance Organization (HMO). A group of doctors and hospitals who accept a set amount of money for services they provide.

Housing: A place where people live.

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I

Insurance: A person pays a set amount of money each month to a company. Then, the company will help the person to pay for health care, like going to the hospital or getting medicine.

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J

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K

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L

Legal Issues: These situations involve laws. A person might need help from a lawyer. In this study, legal issues were guardianship, wills and trusts

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M

Mental health professionals: Trained people who help people with their mental health.

Medical Home: In a medical home, a team of  medical providers manages your care. They listen to the patient to make sure they get the care they need. It is all about the patient.

Medical Providers: People or places that give medical care. This includes doctors, nurses or hospitals.

Mood Disorders: 

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N

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O

Outcomes: Results.

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P

Pap smear: A test where a swab is inserted into the vagina to check for abnormal cells.

Pediatric: Children under the age of 18.

Pediatricians:  Doctors for children.

Policy: Rules people follow to know what to do. OR The ideas and beliefs used by a government or group when making decisions.

Post-secondary education: Opportunities to learn after high school. This can include trade programs, college, or any other learning opportunity.

Primary care: The medical office which is the main point of contact for a person’s medical care. It includes basic medical care like annual checkups and shots.

Preventative Healthcare: Healthcare that keeps you healthy, like regular check-ups and routine testing. Healthcare to prevent a condition from getting worse.

Privacy: There is a federal law that says a person decides who can look at and get a copy of your health information.

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Q

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R

Reactive Healthcare: Getting medical care after you are sick. Not getting healthcare, like a vaccine, to prevent an illness.

Rectal exam: Wearing gloves, doctor puts a finger into the patient’s rectum to feel some internal organs.

Resources- Adult: Information, services and supports just for adults.

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S

Safer sex: Ways to prevent pregnancy and avoid sexually transmitted infections.

Screening: A test to find out if you have or are at risk for a health condition

Shared care: When a pediatric and an adult healthcare provider work together to care for a patient

Schizophrenia:

Seizures: A sudden electrical event in the brain

Self-care: Skills used to take care of yourself.

Sensory sensitivities: Being more aware of and sensitive to your environment. For example, more aware of and sensitive to smells, sounds, touch, brightness, quick moving.

Sexual Health and Wellbeing: the physical, emotional, and social aspects of expressing one’s sexuality.

Sexually transmitted infections (STI): Infections that you can get through sexual contact.

Shared Care: Medical care from a group of providers who work together to treat you

Social workers: A specialist who helps you meet your basic physical, mental and emotional health needs. Some do counseling. Some connect a person to services.

Special Educators: People who teach children with learning differences

Specialists: A healthcare provider who treats specific conditions, or works with a certain area of the body.

Supported decision making: Helping a person understand their choices and make their own decisions. Supported decision making is not like guardianship. With guardianship, the guardian makes decisions for the person.

Supporter or Support Person: Someone who may go with the person to appointments.

STI Testing: Medical tests to find out if you have a sexually transmitted infection.

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T

Taking Blood Pressures: To measure how strong blood is moving from your heart through your your body

Telehealth or Telemedicine Visits: Meeting with your medical provider on a video call.

Transition Care Coordinator: The person who manages services for a patient moving into adult care.

Transition Services Program: Ways to help a child transition to adult services

Transportation: A way to get from one place to another.

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U

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V

Vocational programs: Support and training to help a person find and keep a job.
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W

Waiting Room Environment: How a waiting room is set up to make a person feel welcome and comfortable.

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X

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Y

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