By Annette Hines
When my daughter, Elizabeth, was young, I used to dread the transition from her school program to her summer program as much as she was looking forward to it. Elizabeth was blind and in a wheelchair. She didnâ€™t speak and used a lot of medical equipment to eat and breath and well, just live.
Along with the change in the weather from rainy spring to beautiful hot summer days came the treacherous change in personnel, scenery and numerous threats to my medically fragile childâ€™s health and well-being! Over time I developed this checklist to maintain my sanity and her safety. As parents of a medically fragile special needs child, we worked hard to find a great summer program for our child. As the time comes to send your child off to a program there are critical steps to take and things to consider:
1. Review your childâ€™s Individualized Health Care Plan
- If you donâ€™t have an IHP, you need to create one. An IHP is a little different in every state and is not based on Federal law like the Individualized Education Plan or IEP but it is based on civil rights and accommodations. Your medical team directs the plan and signs the orders required â€“ it is serious business!
- Does it have the most up to date treatment information, medication list and doctors that your child sees?
2. Things to Consider About Your Summer Program
- Does your child need a one-to-one aide?
- Will it be a familiar person or a new person?
- Is there any special medical expertise required?
- Will you be allowed to participate in the hiring process?
- Will there be onsite medical personnel at the program?
- Inside or outside?
- Familiar building or new location?
- Will you (and your child) have an opportunity to tour the location before the program is decided upon?
- Sometimes you need doctorâ€™s orders for things like air conditioning
- Will there be air conditioning?
3. How did things go this year in school?
- Share teacher and medical staff progress notes for the year
- Any healthcare difficulties?
- Any behavioral issues?
- Anything go particularly well that you can integrate into the camp or summer program setting?
4. Meet with the program or camp nurse and director to discuss all of the above. The more comfortable they are with your childâ€™s medical issues the less conflict you are likely to have throughout the program.
- It can sometimes feel uncomfortable to share and be open with information, particularly given the natural conflict that can arise with school districts.
- How accessible is the nurse and what is he or she allowed to do for your child? G-tube feedings, seizure issues, blood sugar checks, issue medications including Diastat or Epipen use?
- Do you have a private nurse or personal care attendant that needs to be introduced?
- Some programs require a contract for liability with the home healthcare provider â€“ make sure this is in order.
- Set up a notebook or other form to report back and forth on healthcare issues between home and program.
5. Tour the program and see if there are any obstacles for your child
- If your child has mobility issues, are there impediments to their participation, i.e. can they get down to the lake and is there a lift system to allow them to swim?
- Is there medicine or special food that needs to be refrigerated?
- Is there special equipment coming with your child?
- What are the emergency procedures for your child in case of fire or other emergency or crisis?
6. Do you need to call a TEAM Meeting to discuss these issues in a more formal manner?
Ultimately, the most important issue is to be prepared, start early and advocate, advocate, advocate. I found it challenging to find a program that would accept my daughter as most summer programs and camps were very afraid of the liability of having her participate in their program. They could not look past all of her medical issues and see the little girl sitting there in her wheelchair just aching to have a great summer. Most days it was heartbreaking, but with good advocacy and preparation, I could put folks at ease and bring them to acceptance and comfort so that she could have a good experience â€“ and I hope that you can too!
Annette Hines, Esq. is the author of Butterflies and Second Chances: A Momâ€™s Memoir of Love and Loss. She is a powerhouse advocate for the special needs community. Not only has she founded the Special Needs Law Group of Massachusetts, PC (Facebook), specializing in special needs estate planning, where special needs families compromise 80 percent of the firmâ€™s clients, Hines brings personal experience with special needs to her practice, as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep understanding of special needs fuels her passion for quality special needs planning and drives her dedication to the practice.