Agenda

AGENDA March meeting

AGENDA March:  Priorities for Research Outcomes

Welcome (Estimated 15 minutes)

  • Housekeeping

  • Review of healthcare transition research

Let’s Get to Know Each Other (Estimated 10 minutes)

  • Introductions are welcomed, but optional.

  • Ideas:

    • Please call me _______. My pronouns are _____.

    • The reason I am here today is _______________.

Part 1: Healthcare Accessibility (Estimated 20 minutes)

During the first focus group, we talked about what can make healthcare access more comfortable and helpful to Autistic youth and young adults.

You told us:

  • Accommodations should be available

  • Training is needed for providers 

  • Knowing what to expect is important

If we put the right ACCOMMODATIONS in place, 

  • how would we know they are working?

  • how would it make a difference in your experience? 

 

If we put the right TRAINING in place, 

  • how would we know it’s working?

  • how would it make a difference in your experience?

 

If people KNOW WHAT TO EXPECT, 

  • how would we know it’s working?

  • how would it make a difference in your experience?

 

Part 2: Transfer of care (Estimated 15 min)

You told us that transition support would be helpful. Here are some examples you shared with us:

  • Having a choice of transferring records/disclosing autism diagnosis

  • Transferring care to a family practice avoids the need for a change in provider

  • Collaboration between school, social service agencies, insurance company and healthcare providers 

  • Shared healthcare decision between youth and parent/caregivers

  • Having a transition manager or care coordinator

If we put the right TRANSITION SUPPORT in place, 

  • how would we know it’s working?

  • how would it make a difference in your experience?

 

Part 3: Mental Health (Estimated 15 min)

During the first focus groups, you told us that mental health support was as important as physical healthcare. Some of the things you said would be helpful are:

  • Resources to find autism-informed mental health providers and resources

  • Opportunities to connect between youth and young adults with similar experiences

  • The availability of providers trained and knowledgeable in neurodiversity across different needs and areas of practice.

  • Eliminating insurance barriers to getting therapy and other services.

If we put the right MENTAL HEALTH support in place, 

  • how would we know it’s working?

  • how would it make a difference in your life?

 

Part 4: Relationships, Dating and Sexual Health (Estimated 15 min)

During the first focus groups, you told us that some specific support would be helpful. For example:

  • Having more opportunities for dating and meeting people.

  • Access to communities of people with things in common.

  • Having information available on diverse ways that sexuality is experienced.

  • Have healthcare providers give sexual health information.

  • Access to therapies like counseling or speech language therapy around communication and relationships.

  • Support in identifying and dealing with abuse and unhealthy relationships.

If we put the right RELATIONSHIP and SEXUAL HEALTH support in place, 

  • how would we know it’s working?

  • how would it make a difference in your experience?

 

Part 5. Adult services to support an active and engaged adult life (Estimated 15 min)

You told us that some specific support would be helpful. For example:

  • Vocational supports to collaborate with other providers during the transition

  • Access to day-time activities opportunities for young Autistic adults

  • Support for broad access to post-secondary education.

 

If we put the right support in place for Autistics to have an ACTIVE and ENGAGED lifestyle, 

  • How would we know it’s working? 

  • How would it look like in a person’s life?

  • How would it make a difference in your experience?

Wrap-up (Estimated 5 minutes)

Thank You & Next Steps (Estimated 5 minutes)

AGENDA February meeting

Welcome (Estimated 15 minutes)

  • Housekeeping

  • Review of healthcare transition research
  • We will be including breaks as needed throughout the focus group.

Let’s Get to Know Each Other (Estimated 10 minutes)

  • Introductions are welcomed, but optional.

  • Ideas:

    • Please call me _______. My pronouns are _____.

    • The reason I am here today is _______________.

    • One thing that is important to me is ___________.

    • One thing I want people to know about me is____.

Part 1: Healthcare Accessibility (Estimated 15 minutes)

There are many challenges with accessibility of healthcare for Autistics: 

  • Sensory sensitivities
  • Communication challenges between Autistics and providers
  • Navigating the system and making appointments

Research tells us that some things can help:

  • Options for direct communications with provider: written, verbal, AAC, ASL
  • Scheduling appointment online or by text
  • planning the visit in advance 
  • skipping the waiting room
  • Having longer visits
  • Having a support person

How does this compare with your experience in Vermont?

Which model(s) or aspects of the models would make healthcare more ACCESSIBLE here in Vermont?

 

Part 2: Transfer of care (Estimated 15 minutes)

Many young adults do not have a regular healthcare provider and only get care when something urgent happens. Accessing healthcare specialists for adults is even harder, especially for Autistics. 

Research tells us that some things can help:

  • Supporting Autistic youth in developing the skills to manage their health needs 
  • Having a transition manager or care coordinator
  • A warm handoff and communication between pediatric and the new adult doctor (including adult specialists)
  • Easy transfer of health records 

How does this compare with your experience in Vermont?

Which model(s) or aspects of the models would help in transferring care between providers here in Vermont?

Part 3: Specific areas of needs: Mental Health (Estimated 15 minutes)

Many mental health needs are not being met during the time of transition to adulthood. There are many types of MENTAL HEALTH resources: social workers, counselors, therapists, psychologists, psychiatrists, coaches, mindfulness practices, religious supports, peer support/autistic organizations, etc.

What kinds of mental health supports would you like to have access to transition to? 

Which model(s) or aspects of the models would help in supporting the mental health needs of autistic youth in Vermont? 

What would help make it easier to transition to these services for adults?

Part 4: Specific areas of needs: Relationships and Sexual Health (Estimated 15 minutes)

Relationships and sexual health can be uncomfortable topics. There are trainings for relationships and sexual health available for educators. Gynecologists are experts of sexual health for women. Organizations like Planned Parenthood support many people with their sexual health.

What supports would you like to be available for relationships and sexual health during the healthcare transition?

Part 5. Adult services to support an active and engaged adult life (Estimated 15 minutes)

There are many types of support that can help with having an ACTIVE, ENGAGED LIFE: Programs supporting work, post-secondary education, recreation, housing programs, transportation services, etc. 

What kinds of lifestyle supports would you like to have access to transition to? 

Which model(s) or aspects of the models would help with lifestyle support needed by autistic youth in Vermont?

Wrap-up (Estimated 5 minutes)

Thank You & Next Steps (Estimated 5 minutes)

Detailed agenda with additional possible questions