Health Transition Toolkit

Learn about Health Transition Toolkit

Purpose

“Health transition” is the time of life when a young adult starts taking more responsibility for their own health and switches from child health care to adult health care. Young adults with special health needs are young adults who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition. They often need more health services or support than most other young adults. A supported health transition helps young adults with special health needs move from child health care to adult care with better coordinated services, self‑management, and continuity of care.

This toolkit is created for young adults with special health needs to help them during health transition. Some young adults may need support using this toolkit. This toolkit can also be used by their families, caregivers, providers, and their support systems to learn about transition and help young adults. Massachusetts has a variety of prominent communities with shared experiences that can offer emotional support and connection to additional useful resources and networks.  Health transition is a journey—use the resources that best fit your current needs and come back to other toolkit chapters as your needs change. 

Cultural acknowledgement

Department of Public Health acknowledges that health beliefs and practices vary across different people. You might use this toolkit differently depending on your unique community, culture, identities, or special health needs. This toolkit is intended to be inclusive and respectful of the ways young adults and their families manage their health and health decisions, both privately and with support of their communities.

Language access information

You can use the mass.gov Google Translate feature to view this content in your preferred language by clicking “Select Language” at the top of the window. Please note that some resources listed in this toolkit are from external organizations and may only be available in English and may not have translations available. 

Disclaimer

All tools within the Health Transition Toolkit have been adapted from and refers to national, state and regional resources. DPH has discussed this toolkit with subject matter experts, young adults, and families for their help and feedback. This toolkit should be for personal use only and should not be used to diagnose or treat a condition. Please consult a doctor and do not rely solely on the toolkit for medical needs. 

You can contact the DPH Community Support Line at [phone] to speak with a resource specialist who can help answer questions about health transition. They can also help you find out if you’re eligible for services, including public benefits, care coordination, family supports, and other resources listed in this toolkit. Please note that the eligibility criteria for services mentioned in the toolkit can change over time. 

Young adults should use this toolkit with help from their parents, caregivers, and support system. You can become more independent while still receiving support from those around you!

Health Care Transition

A person who takes care of your medical and health needs is called a “health care provider.” Health care providers include doctors, nurses, physician assistants, and other providers. As you become an adult, you’ll switch from using a health care provider who cares for children to one who cares for adults. This process is called health care transition. 

This chapter of the toolkit will teach you about how providers and hospitals work, how to find the right provider for you, and give tools to help you learn health and self-management skills. Future chapters will talk about other things related to taking care of your health as an adult.

Table of Contents:

Am I ready to take care of my health?

• Use the timeline and checklist in this section to learn important skills, see if you're ready for some health care changes, and find out where you might need help.  

What do different health care providers do? 

• Learn about different types of health care providers.  

How can I look for a health care provider who works with adults? 

• Look for a health care provider who works with adults and see examples of important questions to ask your providers in this section.

How can I understand my care and work with my care team? 

• Find information about some first steps you can take to start learning about your care, working with others on your care team, and planning for the future.

What are my health care rights? 

• Learn about the rights you have when you see a provider.

Definition list: 

• Find definitions of words specific to this chapter of the toolkit. 

Am I ready to take care of my health?

When should you start learning to take care of your health?  

Got Transition® is a national group that gives helpful information about how to take care of your health and medical needs as a young adult.  Their timeline shows important steps to help you and your support system understand when you can start working on different skills. Use the timeline and talk with your parents, caregivers, family members, or support system about what skills you want to work on now and in the future. It's good to start planning at age 12, but it's okay if you start earlier or later. The important thing is to learn which skills you need to start working on.

Which skills do you have and what do you want to work on?  

The checklist below talks about skills you might want to work on to be more independent and take care of your health. Use the checklist to find out which skills you want to practice and which ones you already know well. 

Remember, it is okay if you are not ready to complete some of these tasks on your own. Talk with your parents, caregivers, family members, or support system about your answers, so they can help you build skills.

About Me
I know my basic health information: height, weight, birthday, and address.	Yes	No	I want to learn
I carry my important personal identification information with me every day: license/state-issued ID, student ID, or medical ID cards.	Yes	No	I want to learn
I know what my condition(s) is/are called and can describe my health needs to a provider or someone who does not know me.	Yes	No	I want to learn
I know where my medical records are and what major information is in them: conditions, medicines, or past surgeries.	Yes	No	I want to learn
I know what my new health care responsibilities are when I turn 18.	Yes	No	I want to learn
Providers and Insurance
I have found an adult primary care provider and dentist.	Yes	No	I want to learn
I have all my health care providers’ information saved on my phone, written down, or memorized, so I always have it.	Yes	No	I want to learn
I know what health insurance I have, how to read my insurance card, and how to contact my insurance company with questions.	Yes	No	I want to learn
Appointments and Care
I know how to make my own appointments and keep track of them with a calendar.	Yes	No	I want to learn
I know how to get to my appointments by myself or with help.	Yes	No	I want to learn
I know how to advocate for what I need or can bring a person to support me at my appointments.	Yes	No	I want to learn
I know how to ask to speak to my providers privately, if I want to.	Yes	No	I want to learn
I have talked with my provider about how drinking alcohol and using drugs impacts my health and condition(s).	Yes	No	I want to learn
I have talked with my provider about how exercise and nutrition impact my health and condition(s).	Yes	No	I want to learn
I have talked with my provider about my sexual and reproductive health.	Yes	No	I want to learn
I know how to talk to my provider when I have concerns about my mental health.	Yes	No	I want to learn
I know who to call and where to go if I have a health emergency.	Yes	No	I want to learn
I can perform my own daily treatments and take my medicines by myself or with help.	Yes	No	I want to learn
I know how to refill my medicines.	Yes	No	I want to learn

This readiness checklist was adapted from the Massachusetts Initiative for Youth with Disabilities and Got Transition®. Look at their checklists for additional skills you may want to work on.

Remember, no one learns all these skills at once. Choose a few skills to practice. As you get better at those skills, start practicing a few more.

What do different health care providers do?

You may see many different types of health care providers in your life including a pediatrician (a provider who cares for children) and a provider who cares for adults. There are some differences between pediatric providers and providers who care for adults. 

• Pediatric providers focus on caring for children. They know about the health and wellbeing of children and work with children and their parents/caregivers to keep their child healthy.  
• Providers who care for adults know about the health and wellbeing of adults and work with their adult patients to help create a care plan for them to keep them healthy.  

Learn more about the difference between pediatric providers and providers who care for adults.

Your primary care provider is the first person to call if you are having concerns about your health. They will help you decide whether you need an appointment and if you should see a specialist. If you already have a specialist (like a cardiologist who cares for your heart) you can call them with questions about your condition. 

Use the table below to learn about what different health care providers and health care facilities do.

Primary Care

Health care Provider	What They Do
Primary Care Provider (PCP) - Pediatrician	Provides preventive care and treats infants, children, and teens who are injured or sick Specializes in childhood diseases, growth, and emotional health
Primary Care Provider (PCP) - Family Practitioner/Family Practice Provider	Provides preventive care and treats infants, children, teens, and adults who are injured or sick Specialize in care for people across their life   Specializes in childhood and adult diseases, growth, and emotional health
Primary Care Provider (PCP) - Internist	Provides preventive care and treats adults who are injured or sick Specializes in adult diseases, growth, and emotional health
Nurse Practitioner (NP)	Helps prevent, diagnose, and treat diseases that affect children and adults Nurse practitioners may work in primary care or specialty care, independently or as part of a care team
Physician’s Assistant (PA)	Help prevent, diagnose, and treat diseases that affect children and adults Physician Assistants may work in primary care or specialty care and often work under a supervising provider
Nurse	Works with health care providers to help care for your health May include a registered nurse (RN), licensed practice nurse (LPN), or clinical nurse specialist (CNS)  Nurses may work in primary care or specialty care
Specialty Care
Provider	What They Do
Specialist	Provides care specific to a particular part of the body, body system, or condition
Obstetrician/ Gynecologist (OB/GYN)	Provides primary and specialty care Specializes in sexual and reproductive health as well as the care of women and people assigned female at birth   Some areas OB/GYNs provide care for are:   Menstrual cycles or periods Preventing or planning for pregnancy   Childbirth Diagnosis and treatment for reproductive health
Cardiologist	Specializes in heart conditions
Dermatologist	Specializes in skin conditions
Dietitian or Nutritionist	Provides care to help support your nutrition, diet, and overall wellbeing
Endocrinologist	Specializes in hormonal and metabolic conditions, including diabetes
Gastroenterologist	Specializes in digestive system conditions
Hematologist	Specializes in blood conditions
Immunologist	Specializes in immune system conditions
Nephrologist	Specializes in kidney conditions
Neurologist	Specializes in nervous system conditions, including the brain, spinal cord, or nerves
Oncologist	Specializes in cancer diagnosis and treatment
Ophthalmologist	Specializes in eye conditions
Orthopedist	Specializes in bone and connective tissue conditions
Otorhinolaryngologist, otolaryngologist	Specializes in ear, nose, and throat (ENT) conditions
Pharmacist	Prepares medicines/prescriptions your provider orders for you and gives helpful information about how to take your medicines/prescriptions
Psychiatrist	Specializes in mental health conditions and can write prescriptions to treat a condition
Pulmonologist	Specializes in lung and respiratory tract conditions
Radiologist	Specializes in X-rays and other imaging such as ultrasound, CT, and MRI
Urologist	Specialize in the male reproductive system and the male and female urinary tract system
Rheumatologist	Specializes in joint, muscle, and bone pain conditions
Service Providers/Therapists/Rehabilitation Providers
Provider	What They Do
Occupational Therapist	Helps people recover and become stronger with the use of everyday activities, movements, and sensory objects
Physical Therapist	Helps people recover and become stronger to improve movement and manage pain
Psychotherapist	Helps people with emotional and mental health concerns May include psychiatrist, psychologist, counselors, or social workers
Respiratory Therapist	Helps with the evaluation, diagnosis, and care of people who are having trouble breathing
Speech-Language Pathologist (SLP)	Helps prevent, diagnose, and treat speech, language, communication, and swallowing conditions
Types of Provider Offices/Health Care Facilities/Services
Facility	What They Do
Family Practice	Helps care for the whole family  Includes child or pediatric care, adult care, and OB/GYN care
Outpatient Clinic	These are offices that do not require you to stay overnight May include preventive, diagnostic, or treatment services
Inpatient Facility	A place where you stay to get medical treatment for a specific amount of time or overnight
Long-Term Care Facility	A skilled nursing facility that provides services and support to people who need extended or permanent care This includes people with chronic illnesses, disabilities, or who are becoming older and need more support
Emergency Department/Room (ED/ER)	Provides medical and surgical care to people who arrive at the hospital needing immediate care
Urgent Care	These facilities are usually outside of hospitals They provide care for illnesses or injuries that need quick attention, but aren’t severe enough for an emergency room
Pharmacy	Places where you can get medicines/prescriptions
Durable Medical Equipment Company	Helps with getting equipment and supplies ordered by a health care provider for everyday or extended use
Home Health Care Services	Provides a variety of health care services that can be given in your home for an illness or injury  These services can be long-term or short-term

How can I look for a health care provider who works with adults?

It’s important to have a primary care provider who can see you regularly and help you when you are sick. In the United States, when you turn age 18, you’ll likely need to switch from a pediatrician to an adult primary care provider. Sometimes, your pediatrician can still see you past 18 years old. Ask your pediatrician about when’s the right time for you to find an adult primary care provider. 

Asking people you know and trust can be an easy and helpful way to find a new provider.

• Ask your pediatrician or specialist for a referral
  • You can say: “Do you have any recommendations for a primary care provider that could help with my health needs”
• Ask your friends or family for recommendations 
  • You can say: “I’m leaving my pediatrician. Do you have a recommendation for a primary care provider I could see? Do you have a provider that you like and trust?”
• Call your health insurance for a list of primary care providers 
  • You can say: “I need to find a primary care provider. Can you give me a list of providers who take my health insurance and are accepting new patients?”
• Search online for providers in your area
  • You can search online: “Primary care providers in my area” or “Primary care providers with experience with disabilities” 

Not all providers accept every type of health insurance, so it is important to know about your health insurance before finding a new provider. 

• An upcoming Public Benefits chapter will give more resources and information about health insurance. 

Are you looking for a health care provider with experience treating people with disabilities? 

You can use DisabilityInfo.org to find a health care provider with experience caring for people with disabilities. You can use this website if you have private insurance, MassHealth, or don’t have insurance. 

• Start by answering three questions:
  • What are you looking for?
  • Where do you want to get it?
  • How do you want to pay for it?
• Then click the green “Find” button. 
• You can look through the results and select categories on the left side of the screen to narrow your search. 

In addition, the Insurance Resource Center for Autism and Behavioral Health has information about finding providers who care for those with autism and behavioral health conditions.  

Are you looking for a health care provider and have MassHealth insurance?

Use the MassHealth Provider Directory to find the right type of provider for you based on your health plan.

• Choose the type of provider or facility you are looking for
• Type in your location and select how far you are willing to travel
• Follow the directions to find the provider right for you

Are you looking for a health care provider and have private insurance?

If you have private health insurance like Blue Cross Blue Shield, Harvard Pilgrim Health Care, or United Health care, your insurance company will have a website called a “patient portal.”

• Create a patient portal account to look at your health insurance information
  •  If you’re not able to set it up by yourself, ask a parent, caregiver, family member or your support system for help
• Once you’ve logged in, most patient portals have a tab where you can find a provider or check to see what providers are covered by your insurance

You can also call the member services phone number on the back of your insurance card. You can ask them for help with the portal or to send you a list of providers who take your insurance.

Are you looking for a health care provider and do not have insurance?

A Federally Qualified Health Center (FQHC) is a community health center that gives primary care services to people without health insurance. You can use the Federally Qualified Health Center (FQHC) Finder tool to find a center near you. When using the Finder tool, you can:

• Select your language 
• Enter where you are
• Enter how many miles you can travel
• Click the search symbol 

You can choose multiple health centers to contact, so you can choose the best one for your needs.  

What questions should I ask a new health care provider?

Sometimes, you might not know if a provider is a good match until you meet them. You can meet multiple providers to find the right one. Talk with your parents, caregiver, family, or support system about what things you might want in a new provider. It can be helpful to write down questions you have and a list of things a provider should know about you. 

Below are questions you might want to ask the provider office before scheduling an appointment: 

• “Are you accepting new patients?” 
• “Do you accept my insurance?”
• “Do you know if the provider has experience with my health condition(s)?”

Below are questions you might want to ask your new provider in your first appointment:

• “Do you have experience with my health condition(s), and can you care for my needs?”
• “Can you provide longer appointment times if I need them?” 
• “Can you accommodate my needs? (wheelchair access, interpreter, etc.)”
• “Is there anything else I should know about you or your facility?”

When picking a new provider, you may want to think about some of these things:

• Are they easy to contact, talk to, and travel to for appointments? 
• Do they listen to your concerns and care about your values and beliefs? 
• Will they make decisions with you, not just for you?
• Will they consider all your health and well-being needs?

When choosing a health care provider, it’s important to see someone you’re comfortable with. If you’re uncomfortable with a provider, try a new one. You and your provider need to work as a team, so you can solve problems together.

How can I understand my care and work with my care team?

Caring for yourself is important for your long-term health and wellbeing. Managing your care involves learning new skills and making decisions that are best for you. It’s important that you make those decisions with your health care providers and care team. That way you know how to care for your health and together you all can agree about what is best for you. 

• Talk with your provider about what you want and need for your health
• Talk with your provider about what care or treatment has been helpful or not helpful in the past 
• Share your cultural beliefs and values with your provider
• Tell your provider the best ways to communicate with and support you

The Charting the LifeCourse Framework can be helpful when thinking about your health and life goals. This tool helps families and young adults create a vision and plan for a good life. It helps you name the supports, resources, and relationships needed to reach your life goals. It also gives tools that will help you advocate for the help you need.

• An upcoming Self-Management and Personal Health chapter will give more resources and information about how to manage your health and health care. 

What services does the Massachusetts Department of Public Health (DPH) offer that can help you understand and navigate your health needs? 

Community Support Line:

• DPH has a Community Support Line that connects young adults with special health needs, their families, providers, and community members to resources and support.  A Resource Specialist will evaluate your needs and provide information about the programs you may be eligible for. They can help connect you to state and local resources including: 
  • Enhanced care coordination for those eligible 
  • Public benefits information and eligibility
  • Family-to-family support
  • Community-based resources 
  • Disability and condition-specific resources
  • Other programs within DPH
• They have Resource Specialists from different cultures, who speak different languages. You can visit their website or call [phone].  

Care Coordination:

• DPH has a Care Coordination Program that provides enhanced care coordinationin partnership with families of children and youth, birth to age 22, with medical complexities. Enhanced care coordination focuses on your family’s needs, preferences, and values. Experienced Care Coordinators can help you with: 
  • Understanding and addressing your or your child’s and family’s medical, social, developmental, behavioral, educational, and financial needs  
  • Becoming a stronger advocate 
  • Connecting with other young adults or families who face similar challenges  
  • Accessing community resources, educational events, and trainings in multiple languages 
  • Planning for transitions including transition to adult services
• They have Care Coordinators available from different cultures, who speak different languages.  You can visit their website or call the Community Support Line at 800-882-1435 to see if you are eligible for this resource. 

Health Transition Webpages:

• DPH has health transition webpages that provide resources for young adults, caregivers and providers around health transition, advocacy, and legal changes for young adults. Visit the webpages to learn more and view other Health Transition Toolkit chapters.

Health and Disability Linkage Coordination:

• The DPH Health and Disability Linkage Coordination Program supports people age 18 and older with intellectual and developmental disabilities. They can provide information about health topics, connect you to health services, and help with the skills needed to manage your health and health care. You can visit their website or call [phone].

What are my health care rights?

Every person has the right to protect their health information, choose who to share it with, make decisions that are best for them, and be treated with respect. In this section, you’ll find information about health privacy and discrimination in health care. 

Who can see your medical records?

Your medical records include all your health information, including appointment notes, health conditions, medicines, and more. When you turn 18, your parent/caregiver cannot see your medical records anymore unless they have legal permission. This is in part because of a privacy law called the Health Insurance Portability and Accountability Act (HIPAA).

• To find out more about your health information and what changes when you turn 18, you can look at: Turning 18: What it Means for Your Health.

Sometimes you and your parent/caregiver may legally name someone called a guardian or health care proxy to help you make decisions about your health care. In this case, your guardian or health care proxy may be able to see your medical records.

• An upcoming Support and Decision Making chapterwill give more information and resources about health care proxies and guardianship.

If you want a support person to see your medical records to help you make decisions about your health care, ask your provider what you need to do to give consent to share your records.

How are you protected against discrimination in health care?

In the United States, there is a history of people being treated unfairly because of their race, ethnicity, disability, gender, or sexual orientation. This is called discrimination. Depending on your identity, you may notice that you are treated differently in your everyday life, including at health care appointments. This might look like:

• Someone saying something mean to you
• People not listening to your wants and needs about your health
• Someone not giving you the support or accommodations you need. Examples could include:
  • A health care facility not having a wheelchair ramp
  • A health care facility not providing an interpreter for someone who uses sign language or doesn’t speak English

The Americans with Disabilities Act (ADA) is a law that makes it illegal to discriminate against people with disabilities.  If you have a disability, you are legally protected in many ways by this law. You can ask for help or accommodations at your health care appointments, school, work, and other parts of your life.

Tell someone you feel comfortable with if you are being treated wrong or are being discriminated against. You deserve to see a provider that respects you and makes you feel comfortable. Do not be afraid to speak up or change providers if they make you feel uncomfortable, disrespected, or unheard. 

• To learn more about discrimination and your rights, you can visit:  Protecting the Rights of People with Disabilities 
• You can file complaints about discrimination at: Massachusetts Commission Against Discrimination
• To learn about the Disability Law Center and their advocacy and protection for people with disabilities, visit: Disability Law Center

The disability community is full of strong advocates, but facing discrimination and disability stigma is difficult and can impact your mental health. If you need emotional support, you can contact the Massachusetts Behavioral Health Help Line. They can connect you with a mental health professional and teach you about services or options to support your mental health.

• Use this resource for information about coping with discrimination: Discrimination: What it is and how to cope 

An upcoming Mental Health chapter will give more information and resources about mental health. 

Definitions list

These definitions are to help youth, young adults, and their families understand this chapter. These definitions were created by the Division for Children and Youth with Special Health Needs for use with the toolkit only.

• Care team: Group of health care professionals that help care for a patient.
• Discrimination: Being treated wrong or unfairly, because of race, ethnicity, disability, gender, sexual orientation, or other identities.
• Health care provider: Doctors, nurses, physician assistants, therapists, or other providers who help care for someone's health.
• Health care transition: When a young adult switches from having child health care providers to adult health care providers.
• Health conditions: Range of physical, developmental, behavioral, emotional conditions, or symptoms that can affect someone's health and wellbeing.
• Health insurance: Plans people can get through the government, work, or a private company that helps pay for some or all their medical care.
• Health transition: The time of life when a young adult starts learning and taking more responsibility of their own health and switches from child health to adult health systems.
• Medical or health emergency: A serious medical concern or issue that needs immediate medical attention from a provider or hospital.
• Medical records: Information online or on paper that explains someone's conditions, symptoms, medicines, or past surgeries and treatments.
• Medicine: This could be a drug, pill, cream, injection, breathing treatment, or other things taken or used to help treat a symptom or condition.
• Patient portal: A website where people can find their health information with their provider.
• Personal identification information: Information that helps say who someone is, including their name and birth date. This can be found on licenses, state-issued ID, student IDs, and medical ID cards.
• Self-management: Learning about and taking more care of one's health independently and with support.
• Skills: Activities or behaviors that someone can learn.
• Support system: Includes parents, caregivers, family members, friends, mentors, and community that can help someone in different parts of your life.
• Symptom: A feeling, issue, or pain that someone can feel physically, mentally, or emotionally and that can be related to a condition. This can be a new feeling or feelings that have been felt in the past.
• Treatment/care plans: A plan made with a provider that explains how someone's health care goals and plans.
• Wellbeing: Health and happiness at a certain point in time.
• Young adults with special health needs: People who have or are at increased risk of chronic physical, developmental, behavioral, or emotional conditions.