We all can help our pediatric patients prepare for a medical transition
For the pre-teen: we can help the child understand his/her condition. We can teach them how to know when to ask for help.
- We can galvanize the younger patient to ask questions of their doctor.
- We can help the child by encouraging parents to give their child age-appropriate information about herself, her condition, and her medications.
For the adolescent: we can evaluate the individual’s knowledge of their condition and medications- and correct or supplement that knowledge.
- We can inform the parent about medical transitioning and encourage them to help their teen develop, over time, the knowledge and skills listed above.
The young adult who is severely disabled and incapable of complete independence will require an additional set of knowledge and assistance.
- They may be able to acquire the skills listed above, but need assistance with daily self-care or living.
- Some of our patients may be able to assume only limited self-sufficiency due to intellectual impairment.
Specific information about services for disabled young adults may include the following:
- Case management
- Residential assistance (supportive living, group homes, adult foster homes, ICF for individuals with mental retardation, etc)
- Higher education for people with disabilities
- Employment help
- Support groups
- Behavior management or mental health services
- Therapy programs (OT, PT, Speech)
- Dentists trained to work with individuals with developmental disabilities
- Medicaid programs (COPES or personal care assistance)
- Respite care
- Home and auto modifications
- Equipment and supplies
- Recreational opportunities
- Referrals to federal/state/local programs (Medicaid, food stamps, SSI, DDD)
Types of information we can help the young adult acquire:
- Can I accurately describe my diagnosis/condition?
- Do I know my medications, what they are for, their dosages, and times I take them?
- Do I know the “warning signs” that tell me I should call the doctor?
- Can I relay to a new doctor or nurse my health history, allergies, immunization history?
Independent Health Care Actions:
- Do I know how to schedule an appointment with my provider?
- Can I ask my doctor my own questions?
- Can I answer my doctor’s questions?
- Do I know how to get my prescriptions refilled?
- Can I take care of my own daily health care without reminders?
- How will I keep track of medical appointments?
Knowledge of Adult Medical Clinics:
- Do I have the contact information for the adult provider(s) I will be going to?
- Do I know how to schedule an appointment?
- How will I transport myself to the appointment?
- Do I know how to obtain my medical records?
- Do I know the length of my insurance coverage under my family’s plan?
- Do I know the name of my insurance carrier? Do I have my membership card?
- Do I understand my current insurance coverage?
- Do I know where or how to access public and private programs for financial or medical assistance?
- Have I thought about how and when to discuss my health with different people (i.e., friends, employers, etc.)?
- Who would I talk to if I feel stressed out, nervous, down, or angry about my condition?
- How realistic am I about my health?
- Do I have a medical alert ID in my wallet or have a bracelet/necklace?
- Does my condition affect things like driving, alcohol use, sexuality, fertility? How?
- Do I know how to get information about education, financial aid, employment, disability rights, etc. if I need this?
- How do I get information on topics such as Advance Directives, possible transplantation, genetic counseling or testing, infection prevention?