Christopher is excited: He has just finished kindergarten, marked his sixth birthday and is looking forward to his first week at camp. He loves playing with his friends, swimming at the pool and anything sports-related, so he knows he is going to have fun.
Christopher’s mom is worried: He was recently diagnosed with Type 1 diabetes, and this is his first experience outside of school where someone, other than family, will help manage his diabetes. He needs to have his blood sugar checked multiple times a day, calculations performed at lunch to determine the number of carbohydrates he has eaten, and an insulin injection drawn and administered. He also has specific procedures that must be followed when his blood sugar levels get too high or too low. Christopher is registered for camp all summer with your parks and recreation agency, and his family requests your support for managing his diabetes at camp. How do you proceed?
The 2008 Americans with Disabilities Act Amendments Act (ADAAA) broadened the definition of disability to ensure the inclusion of individuals with impairments such as cancer, diabetes, epilepsy and other conditions affecting major life functions or body systems. The number of U.S. adults diagnosed with diabetes in the last 35 years has tripled. And, from 2000 to 2009, the number of U.S. children diagnosed with Type 1 and Type 2 diabetes increased by 21 percent and 30 percent, respectively. Severe allergic reactions or anaphylaxis is also on the rise, and studies indicate a 4 percent increase of diagnosed severe allergies across all age groups. While the numbers of diagnoses for other medical conditions, such as epilepsy or problems with the digestive system, have not had a marked increase, advances in medicine and medical procedures are opening the possibilities of a more active lifestyle to individuals with those conditions.
State laws determine medical practice and what procedures may and may not be performed without a medical license. There may be separate laws for what procedures can be performed that are considered routine (for example, feeding via a GI tube or testing blood sugar) or that are considered emergency (for example, administering diazepam for a seizure or a glucagon injection for extremely low blood sugar).
Managing participant medical conditions and what it means for ADA compliance is currently being argued in court or through recent decisions in many states. Reasonable modification in the recreation programs context is fluid based on the resources of the agency, but as more court cases are decided, standardized practices for medical support will begin to emerge.
Policy and process for managing medical conditions in programs is critical to providing a safe experience and reasonable modifications, and for implementing modifications effectively and correctly by staff and volunteers. Agencies faced with providing reasonable modification while not having staff with the medical knowledge or expertise to develop policy or implement medical procedures in a program setting is a challenge that is only expected to grow.
Policy for Medical Modification
The process for managing a medical modification request mirrors any other ADA modification request. Policy is a good place to start, but it can also be built as requests for medical modification are received. The policy should include a purpose statement describing why the agency gives consideration to medical modifications. The purpose statement can be a basic compliance statement or it may be centered on meeting the needs of individuals whenever reasonable. The purpose statement guides staff members as they implement the policy and helps participants understand the agency’s position on supporting medical conditions. This may be an addition to an existing inclusion policy or a stand-alone statement focused on medical needs.
The policy should reference review of the applicable state laws regarding medical practice and what is or is not allowed in the state, and, if the agency is more restrictive, what procedures it allows or does not allow to be performed. In addition, the policy should identify who in the agency is involved in the review and decision-making regarding medical modification, and from whom staff members should seek guidance if they have questions. The policy should describe the process for receiving and considering a modification request, and it should be reviewed and approved with key agency representatives, including medical and legal counsel.
Process for Medical Modification
There are a variety of ways to approach the process for medical modification and each process must be tailored to meet the resources, needs and limitations of the agency. In Raleigh, North Carolina, for example, our process begins with a request for medical modification received from a participant, followed by an information exchange. The participant is provided with a welcome packet of extensive information about the program, including the location and site amenities; hours and nature of the programming; field trip locations and descriptions; an example schedule, including the number of transitions and types of activities; typical behavioral, social and physical skills needed to participate; and group size, staff ratios and level of staff training. This packet also includes a letter for the participant to share with his or her physician. Information, in the form of a medical care plan, is requested back from the participant or his or her parent/caregiver and physician.
The care plan collects all of the information staff needs to fully understand the modification request and how care is to be provided. The plan also has the physician’s signature authorizing non-medical staff to perform the procedures. Generally, care plans divide requests into five categories:
- Independent care: the participant can manage all routine medical procedures independently, but may need, for example, designated space to perform the procedures, to deviate from normal schedules, or to have special access to, storage or disposal of medical supplies.
- Supervised self-care: the participant can generally manage all routine medical procedures independently, but may need reminders to perform procedures on time or someone to double-check dosages or assist with documentation.
- Staff-supported care: the participant cannot perform some or all routine medical procedures independently, and requires assistance from staff to do so and to complete documentation.
- Care by a personal assistant: the participant cannot perform some or all routine medical procedures independently, but will have a caregiver participating with them to manage the participant’s medical needs.
- Emergency care: the participant has medical needs in emergency situations and requires assistance from staff to perform procedures and complete documentation when an emergency situation arises.
In the case of Christopher, who you met earlier, his care plan will place his needs into two categories: staff-supported care for routine diabetes procedures and emergency care for diabetes-related emergencies. We’ve found that most requests for staff-supported care are for younger children. Many teens and adults are competent managers of their own care with minimal modification needs in programs.
The next step is determining if the agency is adequately resourced or can become adequately resourced with staff and supplies to provide a safe experience. If the answer is “no,” it may be because a medical condition is so profound that non-medical staff simply cannot provide care in a safe manner — our local school district calls these individuals “medically fragile.” If the process has been designed correctly, with thorough information about the program and the participant’s physician signing off on the care plan, then these instances should be rare.
Once the decision to accept the modification request is made, independent care and supervised self-care plans are the most straightforward. They usually involve documenting the modification and discussing it with the program staff, then checking in regularly with the participant or participant’s parent/guardian and the program staff to ensure the modification is working as intended.
Care provided through a personal assistant is also relatively easy to implement. Clarification of the personal assistant’s role is the most critical component: will the caregiver get to participate in the program or act only as an observer, are there transportation or paid-per-person expenses that will need to be considered as part of the program, is the caregiver considered a participant or a volunteer, will he or she need to complete a background check, etc.? Once these questions have been answered, documentation and communication with staff, participant, the parent/guardian and caregiver are the next step.
Emergency-care modifications and staff-supported care modifications are more challenging. Specialized staff training, care documentation, decision trees and communication protocols may all be part of the process. It is preferable to have a medical professional provide training to staff in partnership with the participant or participant’s parent/guardian but that may not be feasible in all cases. Sometimes, a participant or a parent provides training to staff. However training is done, document it! The hours of the program, the number of staff members needed to perform a procedure and the turnover rate of staff will determine how many staff need to be trained initially and at what point retraining is needed to ensure trained staff is available whenever the participant is in the program. Continuous communication is needed at first to establish that expectations with the modification are being met. Over time, communication may be less frequent, but there will be instances that are pre-determined by the agency and the participant or parent/guardian when communication is expected; for example, anytime the agency’s ability to provide care is compromised, or anytime the participant’s care plan must be updated.
Last but not least, address fears that can come in all shapes and sizes and are different based on individuals and their role in creating a medical modification. For instance, among staff there may be a fear of needles, but, more often, it’s the fear of having such a great responsibility, of performing badly or, in spite of performing well, having a bad outcome. The participant, participant’s parents and other participants in the program can also have fears. Work to address any fears through training, communication, building redundancy into how the care plan is implemented and practice.
Medical conditions are not static and therefore most medical modification requests will change over time. As children grow, their competency with their care management does too and a modification request may change from staff supported to supervised self-care. A participant may experience an improvement in or a worsening of a condition and need different level of support. A medical advance may change a procedure or a participant may get a new piece of equipment. In Raleigh, we check with all participants with a medical modification at minimum on an annual basis to update paperwork and communication with staff if needed.
A Worthy Cause
Park and recreation agencies across the country provide endless recreation opportunities, and it seems only fair to make those opportunities as accessible as possible to everyone, including individuals with medical conditions. While daunting at first, a good process and dialog with key stakeholders (participants, parents, the medical community, an attorney and staff) can create very meaningful, safe and worthy outcomes.
It is wonderful to see the emotional transformation from worry to appreciation for moms like Christopher’s. It’s a relief for them to know the agency takes their children’s needs seriously and has a process in place to manage those needs. Families are also grateful to be able to have siblings attend the same program and not have to find specialty offerings that cater only to children with medical needs like theirs. The feeling of knowing that their child can be just like any other child: priceless.
Kathy Capps, CPRE, ARM-P, is the Manager, Learning Development and Risk Management, City of Raleigh Parks, Recreation and Cultural Resources Department.
- Diabetes Management in Programs (pdf)
- Doctor Intro Letter (Word doc.)
- Medical Emergency Action Plan for a Participant (Word doc.)
- Participant Welcome Letter (Word doc.)
- Personal Assistant Policy (Word doc.)
- Seizure Management in Programs (pdf)
- SVT Management in Programs (pdf)
- Tube Feeding Management in Programs (pdf)