Saqr, Y., Braun, E., Porter, K., Barnette, D., & Hanks, C. (2017) Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting. Autism, 22(1), 51–61. https://doi.org/10.1177/1362361317709970 (Free full text)
Hart, L. C., Saha, H., Lawrence, S., Friedman, S., Irwin, P., & Hanks, C. (2022) Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum. J Autism Dev Disord, 52(7), 2924-2933. doi:10.1007/s10803-021-05171-w (Free full text)
Adapted Abstract
Background and Aims: These 2 studies describe the evaluation and evolution of the Center for Autism Services and Transition (CAST) model. CAST is a medical home, transition model for autistic adults implemented within a primary care practice for adults.
Methods and Results: The first article includes 2 small studies: a focus group and a chart review of Autistic patients who visited the CAST clinic between 2014 and 2015. The focus group of 10 Autistic young adults aged 18 to 30 identified main problems and potential solutions to help with visits to a primary care clinic for adults. Some of the most important problems were sensitivities to sound, light and touch and anxiety being in the waiting room. The CAST model provides pre-visit phone call assessment of needs and visit accommodations. The chart review of 74 Autistic patient visits at the CAST clinic found that 17 (23%) needed accommodation for their healthcare visit and 7 of these patients could not complete one part of the exam like the vital signs. The most frequent accommodation was to skip the waiting room. The second article describes changes to the CAST clinic over time: videos of procedures for patients and for providers, “happy visits”, educational sessions, and telemedicine visits were added.
Conclusion and implication: Planning the healthcare visit and offering accommodations like skipping the waiting room can improve the success of healthcare transition to a new provider for adults.
Findings
- Problems Autistics identified with visiting a primary care clinic:
- Sensitive to sound, light & touch.
- Anxiety being in the waiting room.
- Stress about talking with the physician and medical team and around the physical exam.
- Possible solutions:
- Offer some control on the environment (earphones, lighting, etc.)
- Have things to do while waiting.
- Provide options for how to communicate with the provider.
- Accommodations used most often for the first visit at the CAST clinic:
- No waiting room, registration done in the exam room.
- Waiting to take vital signs.
- Warning before touching.
- Waiting in the car until provider is ready.
- Lights off.
- First appointment of the day.
- Provider videos are watched more often than patient videos.
- Social work support is important but based on grant money.
- Changes in staff is hard since patients become comfortable with their provider.
Summary
The CAST model is a medical home program that focuses on providing care for autistic adolescents and young adults within a regular primary care practice. It includes patient centered care with multiple doctors as a part of the care team. Coordination of care to other specialty doctors is arranged as needed. Urgent needs are met through extended in-person hours and alternative methods of communication between patients and providers. New patients to the practice receive a pre-visit assessment call and longer first patient visit with their healthcare provider. The follow up visits are also extended as needed. As of January 2021, the CAST clinic served 858 Autistic patients in the large city of Columbus, Ohio.
This summary includes 2 articles evaluating and describing the evolution of the CAST model. The first article includes 2 small studies: a focus group and a chart review of Autistic patients who visited the CAST clinic between 2014 and 2015.The focus group of 10 autistic adults discussed healthcare experiences and barriers to healthcare access. The most important barriers identified were sensory sensitivities, anxiety being in the waiting room, stress about communicating with the office staff and healthcare provider and stress around the physical exam. Possible solutions proposed were offering control over the environment, providing something to do while waiting and options for communicating with the provider.
The retrospective chart review included 74 new autistic patients aged 15 to 45 seen at the CAST clinic. This chart review included demographic information as well as information on diagnosis, intellectual disability, previous experiences in medical settings, aggressive behaviors, physical limitations, and medication use. The 74 patients received a pre-visit assessment and 17 needed modifications to the primary care setting. The concerns identified were difficulty waiting, sensitivities to noises or bright lights, fear of needles, difficulty being touched, history of aggressive behavior in a medical office, and difficulty taking vital signs. Individualized plans were created for each patient’s first office visit. The most common accommodation was skipping the waiting room and completing the registration in the exam room. Other accommodations included waiting to take vital signs, warning before touching, waiting in the car until the provider is ready, lights off, first appointment of the day and a bodyguard out of sight was used for one patient. Of these 17 patients, 7 were unable to get complete vital signs or complete the full physical exam.
The second study is an evaluation of the CAST model performed after additions were made to the base model described above. Having a social worker as a part of the practice has proved to be valuable but limited due to grant or donation funding. Procedure videos have also been added. There are videos for providers and videos for patients. These videos include taking a blood pressure, having an EKG done, getting blood drawn, and receiving a vaccination. Another addition is “happy visits” where the patient comes in advance of their upcoming appointments to become familiar with the staff and the environment. Evening educational sessions have also been added. Finally, telemedicine visits are also offered.
A total of 858 patients have been seen by CAST and there are about 80 visits per month to the clinic. The procedure videos for the provider were watched 18,488 times and the patient videos were watched 7756 times. The authors note that the procedure videos may have more watches due to autistics watching both videos as well as other clinics nationwide using these videos to train their providers after seeing the authors talk about these videos at conferences. The “happy visits” were helpful for some but not for others.
Real-World Implications
Planning the healthcare visit and offering accommodations like skipping the waiting room can improve the success of healthcare transition of autistic youth and young adults to a new provider for adults. Additional funding is required for additional staff like a social worker, for longer provider visits and for additional services like “Happy visits” and educational sessions. This program was implemented within a regular primary care setting and might be a model for other similar clinics.
Limitations
- The program is provided in a large city and may not be feasible in more rural
- Funding comes from grants which can vary over time leading to staffing changes and cuts in services like evening education sessions.
- These results are from retrospective data. We do not know if this model is better than typical healthcare experience.
Text Slides
Click on the slides to advance. Click on the underlined words to read the definition.
Video
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
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may act without thinking
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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.
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.
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.
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.
E
Executive functioning: How your brain works to focus, make a plan, remember and do more than one thing at the same time.
F
Funding: Money from an organization or government.
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.
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.
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.
J
K
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
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:
N
O
Outcomes: Results.
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.
Q
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.
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.
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.
U
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.
