During our years of dealing with medical issues, I’ve spoken at conferences and also was asked by Children’s Hospital of Michigan to speak to a group of residents about how to speak to patients that have chronic medical conditions.
Here are the initial questions we’ve compiled to help you navigate your child’s diagnosis:
- What is the name of the disease or condition? When you go home, you will Google the diagnosis for recommended treatments. You will also want to check blogs and social media sites for anecdotal evidence regarding other families experience with both treatments and medical practitioners.
- Is your child’s life expectancy, both short and long term, affected by this condition?
- Will it impact my child’s home or school life?
- Is there anything we need to be aware of as we begin this process of learning about their illness? Where can I learn more about my child’s condition?
- What level of support do you feel my child will need at school, home and in the community?
- How did you arrive at this diagnosis? What tests did you use? What are the diagnostic criteria for the diagnosis?
- How did my child perform on the tests that were used?
- Are there any other evaluations needed to confirm the diagnosis or to help in treatment planning?
- Can I have copies of the medical reports that detail this process as well as copies of your medical notes and follow up notes from this visit? It is important to have a copy of the medical reports for your child’s personal medical binder. You will need to begin building your own personal binder with your child’s medical reports, lab work and treatment plans. Depending on your child’s medical condition, you may be working with a large team of medical providers and it is important that you have ALL of your child’s medical information readily accessible to you and your team of doctors as sometimes there may be a lag in obtaining reports from various medical offices.
- Based on your observations, what therapies do you believe would be most beneficial for my child? Is there a specific plan/order of treatments that should be followed?
- Can you please advise what educational therapies and supports will be needed?
- What community resources are available to my family, including resources to support parents? Please see this link on the Healing Complex Kids Web site for a list of community supports. (insert link- work in process).
- Do you have any recommendations for what I should tell my child about the evaluation/diagnosis? Where can I get more information?
- When should my child be evaluated again in the future? What timeline for follow up should we be following? This is especially important when dealing with specialists that have a four to five month initial wait. Before you leave your appointment, get out your calendar and make your next few appointments.
- Can you share with me some success stories of children with my child’s diagnosis that have recovered or dramatically improved their quality of life? If the medical provider tells you no one has recovered or improved, then RUN (do not WALK) out the door and do some additional research to figure out where you should be taking your child. Even children that have severe genetic conditions have the ability to improve and you need a medical provider that will help you put a plan together and will celebrate your victories and help you along your journey.
- Ask your doctor what are the pros and cons of the various therapies/alternatives they have discussed with you.
- Is my family eligible for any government supports? For example; “Michigan has a Children’s Waiver Program (CWP) which makes it possible for Medicaid to fund home and community-based services for children who are under age 18. To be eligible for the CWP, the child must have a documented developmental disability and need medical or behavioral supports and services at home. In addition, the child must have behavioral or medical and habilitative needs at home on a consistent daily basis that meet requirements for the level of care for an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID).”
- Michigan has a limited number of waivers and it can take years to receive a waiver. To begin the process Contact the Access Center in your family’s county of residence at: https://cmham.org/membership/cmhsp-directory/ Be prepared to describe your child’s needs, their functional limitations, the in-home help and services you are requesting, and your family’s income and resources (including private insurance and Medicaid eligibility). (https://www.michigan.gov/mdhhs/0,5885,7-339-71550_2941_4868_80988-427535–,00.html)
This checklist an excerpt from the Pathway to HOPE Resource Guide. To purchase your copy (Oakland County, MI residents pay only S&H thanks to a grant from United Way of Southeast Michigan and from Oakland County government), visit https://healingcomplexkids.org/product/2021-pathway-to-hope-resource-guide/.