Helpful Hints for Parents and Caregivers
The following hints may be helpful for families navigating the Mental Health and Behavioral Health System:
1. Document, Document, Document…It is extremely important to keep a notebook or file where you record information before and after getting services for your son/daughter. Your notes should include:
- Name of the person you speak with and the agency they work for
- Telephone numbers
- The date and time you called
- What was discussed in detail
- What each of you agreed to do as a result of the conversation
- Next steps for you
- Treatment plans
- Progress notes
- Correspondence: letters, faxes, print-outs of emails that are sent to you by any providers, MCO(managed care organizations) representatives, State or County officials, educators, support staff, all team members including copies of any letters, faxes, and emails you send.
- Evaluations: your child’s written evaluations and any other documents or supplements to the evaluation
- Keep the original documents for your records and send copies when information is requested.
- If you make a request over the phone or in person, follow up with a written request either by email or letter.
- Make sure to carefully read the evaluations, treatment plans and other documents about your child so you are familiar with the content and that they accurately reflect your child.
- Keep a calendar of date planner and write every doctor appointment, therapy session, evaluation, ISPT (interagency service plan meeting) meeting, EVERY meeting and important conversation, etc.
- Attending all appointments for your child is very important. If you have an emergency and cannot attend, please call and cancel as soon as you realize you cannot make it.
2. Below is a list of documents and information you will need often:
- Your child’s birth certificate (a copy is fine)
- Your child’s Social Security number
- Your child’s health insurance information
- Knowledge of your child’s medical history (any illness or injuries)
- List of all medications and dosages
- Knowledge of any reactions to medications and allergies
- Knowledge of your child's developmental milestones (when your child walked, talked, etc.)
- Knowledge of your child’s mental health symptoms
- Knowledge of your child's strengths, skills, and talents
3. Advocacy tips and hints:
- Become knowledgeable about your child’s illness and your rights as a caregiver.
- You know your child and family situation best. Be clear about your child’s strengths, your needs, your concerns, and what you think will help your child and family the most.
- Join organizations so that you can access books, journals, and films to learn about your child’s illness. Find and explore websites to find information on the illness, medications, treatment options, education law, and the mental health system.
- Be sure to invite your child’s case manager, therapist, behavior consultant, therapeutic staff support, psychologist, psychiatrist, or advocate to assist you through this process.
- Before attending a meeting, make a list of all your concerns, goals, and ideas that you can contribute to the conversation ( remember you are the best authority on your child)
- Take a picture of your child to bring to the meeting
- It is natural to be nervous when attending an important meeting that may impact your child’s mental health or education services. Even if you are very knowledgeable, you will not be effective if you cannot present your ideas clearly and with confidence
- Use appropriate communication; begin sentences with “I” instead of “you” to reduce blame and defensiveness. Be assertive not argumentative
- Ask for meeting breaks if you feel you are losing your patience. Remember losing your temper will not resolve any problems.
- Listen to what others have to say even if you disagree with their ideas. You can respect another’s opinion even though you may not agree with what is being said. Remember you are speaking for your child; do not get caught up in “winning.” Be as polite, respectful and flexible as possible but be persistent. If you are not getting anywhere with a particular individual, ask to speak to their supervisor.
- Surround yourself with support (friend, relative, advocate, etc.)
- Do not be afraid to ask questions….ask many of them. Ask for clarification if there is something you do not understand.
- The mental health system has a language of its own. Don’t be afraid to ask what an acronym means.
- Insist that your child’s care is “family centered’ building on your child and families’ strengths.
- Ask for business cards at meetings.
- Make a chart or list who was at the meeting. Be descriptive if you need to so you can remember who is sitting at the table with you.
- Feel free to get a second opinion…this should be about what is best YOUR child
- Read all the information BEFORE you sign!
- NEVER sign a blank form!
4. Questions you may want to ask in a meeting….
- What do I need to do to help my child?
- What treatment and support services would best help my child?
- What has helped other children like mine?
- What do I do in a crisis?
- Who can I call in the evening or on weekends?
- Will these services improve my child’s mental health?
- What should I expect?
- Can I see my child’s records and reports?
- What are my rights?
5. What should I look for in an evaluation or reevaluation?
- Identifying Information about your child: name, age, birth date, sex, family members and place of residence
- Developmental history: prenatal information/history (if available) early milestones, any early illnesses or injuries
- Reason for referral to the psychologist
- Relevant information such as: prior treatment or service history (if any), all mental health or wraparound services that the child has already received or is receiving now and the child’s responses to this treatment. It should also include: when the services were provided; for how long; in what settings; at what intensity (frequency, length of time of each intervention, etc.) What were the goals and objectives of the services, and what progress or lack of progress the child has made with these services?
- In a re-evaluation provide a list of services the child is currently getting and a Service Update that highlights changes in services from when the last evaluation was made. Anything of importance in a prior plan.
- Child and Family Strengths and Culture
- Concerns about the child
- School: Special Educations, relevant pieces of an evaluation, behaviors, teacher concerns
- Community: what natural resources does the child and family have
- Drug and Alcohol issues or relevant information
- Medications: names, dosage, effectiveness. If medications were prescribed and the child is not taking them an explanation of why
- Other: may include any other systems the child is involved with
- Mental Status evaluation: performed during a face to face interview
- Interview and Discussion
- Make sure ALL information is accurate and correct. DO NOT be afraid to ask them to make corrections.
6. Terms and acronyms may differ from county to county or in different states. For example:
- Mental Retardation (MR) is only used in some counties in Pennsylvania (currently the Commonwealth is not using it at their level). The term you may hear is Intellectual Disabilities (ID) or Intellectual Developmental Disabilities (IDD).
- Refer to the Glossary for additional terms and definitions.