THE PARENT/GUARDIAN’S ROLE IN SUPPORTING A SCOUT WITH A DISABILITY OR SPECIAL NEED
IN THIS MODULE:
- CAN DO ATTITUDE
- TEACHING LEADERS ABOUT YOUR CHILD
- HOW ADVENTURE PROMOTES PERSONAL GROWTH
- PROVIDING INDIVIDUAL SUPPORT FOR YOUR CHILD
- HOW TO ENGAGE WITH YOUTH LEADERSHIP
- HOW TO ADVOCATE FOR YOUR CHILD WITHIN SCOUTING AMERICA
This module is for parents and guardians of children with disabilities or special needs. You are already your child’s most committed advocate, and no doubt you’ve faced obstacles with schools and other institutions. We want to help you be effective as you interact with the Scouting program and Scouting America volunteer leaders. This discussion assumes you are already familiar with the information in Module B about the Basics of Scouting.
CAN DO ATTITUDE
“Achievable challenge” is a fundamental concept of the Scouting movement. We want the youth in our program to have opportunities to grow and become their best selves. This is no different for a youth with a disability, even though we have to make adjustments to what we do to have a successful Scouting journey.
Scout leaders and other parents will need you. You help them understand the best way to work with your child. Your attitude toward your child and the Scouting experience could be the most important part of having a successful experience for everyone involved. To begin with, take a moment to think about everything that your child can do today despite the disability. Then take a moment to imagine everything your child could do if given good experiences and time to grow and mature. That is your future. The Scouting experience will be better if we all focus on what your child can do, rather than what he or she can’t do right now.
If you hold a positive image of your child’s future, you should find that your Scout leaders and the other guardians/parents are willing to partner with you, and go over and above to help your child participate fully in the program. Similarly, if you can maintain a positive attitude toward the other adults you encounter, seeing them as partners and teammates rather than obstacles, everyone’s experience will be better. That includes not only your child, but all of the Scouts your child is with.
Please do not sell your child short. At the same time, understand that earning ranks and awards is not everything. Your child can benefit and grow from your time in Scouting without ever becoming an Eagle Scout.
TEACHING LEADERS ABOUT YOUR CHILD
Did you ever wish your child came with an instruction manual? You are not alone. Scout leaders have great hearts for kids, but with few exceptions, they are lay people with no special training or knowledge about your child’s specific needs. For that matter, no single volunteer leader could be an expert on everything to do with Scouting. We want to give the youth of America access to a world of infinite possibility. We emphasize training and ongoing learning for leaders, but our universe is too big for everyone to know everything. Since volunteers have limited time for training, they usually focus on what is most urgent for their unit. The point is that your leaders need you to help them understand your child.
Ideally, the first step in the process is a joining conference with the leaders shortly after you join the Scout unit.A joining conference is similar to a parent-teacher conference at the beginning of a school year. Ideally, the adult leader that spends the most time with your Scout will meet with you to get to know your Scout better. The point is to give the leaders basic information about your child’s unique abilities and needs. (There is more information on joining conferences in Module F, and you may want to read that too.) If your leaders are unfamiliar with joining conferences and you have never been asked to have such a visit with them, there is no reason you cannot take the initiative and set up a meeting.
Over the years, you will want to keep the communication channel open between your family and the leaders that work with your child. Feel free to give or ask for advice on how things could be done better. Discuss any concerns you have about upcoming events to see if they can be resolved. Encourage leaders to talk to you about their concerns and challenges too, since you may be able to help them. Bottled up frustrations can cause problems and hard feelings if they are not dealt with.
You can also use your experience to teach other Scouts to be inclusive and caring. Handled well, a simulation of a disability can show Scouts that people with disabilities can do more than meets the eye and that they are not that different from anyone else. There are also more formal options, like being a merit badge counselor for the Disabilities Awareness merit badge, teaching the Webelos – Aware and Care elective adventure, or the Wolf – Cubs Who Care elective adventure.
HOW ADVENTURE PROMOTES PERSONAL GROWTH
Scouting is different from most other environments you have encountered with your child. In Scouting, we manage risk rather than avoid it entirely. To use an old adage “A ship is safest when it is in harbor, but that is not what ships are made for.”
We teach through adventure, so we want the youth to feel some danger even when there isn’t any. We keep the real risk low by using the rules in the Guide to Safe Scouting, rigorous leader training for higher-risk activities, and following our tradition to Be Prepared. Behind the scenes we analyze every incident, including near-misses, so we can prevent them in the future.
You may be uncomfortable with this at first, especially if your child had exceptional struggles up to this point in life. If your child tells you about something they are about to do that sounds scary, remember it probably isn’t as dangerous as it looks. If you are ever concerned about the safety of a proposed activity, contact the leader in charge and find out what the actual safety arrangements are. Scouting is an open program and there are no secrets from parents and guardians.
We encourage our Scouts to take individual responsibility for their own well-being and to experience some consequences. This is especially true in the programs above the Cub Scout program. Scout leaders will let Scouts get dirty, wet, hot, cold, or otherwise uncomfortable; while at the same time protecting them from coming to harm from hypothermia, heat exhaustion or the like. If there is no medical obstacle, a youth with a disability can have these same challenging growth experiences.
So what does this mean for you? Three things, in principle. First, you will need to think carefully about the limits you put on your child’s participation, to distinguish between the manageable discomforts that can build confidence and the things that are unsafe. Second, if the disability truly makes your child medically vulnerable, you will need to explain the risk to the leaders in charge of the activity to see if there are ways to work around the difficulties. Third, there will be times where you want to attend an event in person to give the individual attention your child needs, while still giving your child a chance to participate.
PROVIDING INDIVIDUAL SUPPORT FOR YOUR CHILD
Some disabilities have specific medical needs for daily living. Without being exhaustive, this could include using catheters or feeding tubes, or helping with toileting, bathing, or getting dressed. These kinds of services are beyond what volunteer Scouting leaders can or should provide.
There are also some conditions where the Scout needs one-on-one monitoring to interrupt harmful or dangerous behaviors. The person watching over this Scout may also need specific training to recognize the triggers and use appropriate management methods. There is rarely an appropriate adult in a traditional Scout unit available to provide such intensive supervision. The situation may be different in a special-purpose Scout unit that tailors its program and leadership ratios to work with that specific disability.
The family is responsible to provide a caregiver when a Scout cannot handle his or her own unique medical, physical, and behavioral needs with minimal adult assistance. This caregiver could be a family member, a qualified friend of the family, or it could be a paid professional caregiver. All caregivers need to take Scouting America Youth Protection Training to understand the protections we provide to all Scouts while at Scout events, and they need to complete their own medical forms to assure they are fit enough to participate alongside the Scouts. A non-family caregiver will also need to be registered as an adult member of Scouting America to receive necessary background checks, and will need to carry appropriate medical power of attorney documents.
Similarly, any special individualized equipment required to meet the needs of a Scout with a disability must be arranged for by the family.
HOW TO ENGAGE WITH YOUTH LEADERSHIP
Scouting is different from many other youth programs because kids are given significant leadership responsibility. Our adult leaders support this youth-led model during Scouting events, and our youth leaders are taught to use adult mentors as resources. To a parent or guardian, “youth-led” will often look chaotic because the youth are learning to lead by doing it. Our experience is that youth leaders really can work most things out when given a chance.
You can intervene if you need to take care of your child at a Scout event, but it is important to work through the chain of command unless there is an immediate threat to health or safety. If you are a registered Scout leader, you were trained how to take your advice or concern to a youth leader rather than take over the situation yourself. If you are a guardian or parent who comes along on an outing, the best way to handle a concern is to talk to the adult leader overseeing the activity so he or she can talk to the correct youth leader.
Taking charge of a situation doesn’t just deprive the youth leaders of an experience, it might also deprive your Scout of a chance to work something out on his or her own. This is important for future life because youths with disabilities will need to be able to advocate for themselves when they are adults.
HOW TO ADVOCATE FOR YOUR CHILD WITHIN SCOUTING AMERICA
Before continuing, we need to reiterate a point from Scouting America Youth Protection Training that any allegation of abuse, violation of Scouting America youth protection guidelines or policies, or inappropriate behavior by a Scout/Scout leader/parent/other person is to be immediately reported to your council Scout executive and to any public authorities as required in your state or jurisdiction. That is a different situation from advocacy as it is being discussed here.
There are issues that can come up with a disability that are beyond the ability of your Scout unit to solve. The most common are (1) difficulties related to meeting advancement requirements, (2) special accommodations needed at multi-unit events (like day camps, summer camps, camporees, and jamborees), and (3) overcoming objections to participating in high adventure opportunities and advanced youth leader training. Though rare, there have also been situations where a unit’s leaders created their own rules that go beyond how the Scouting program is intended to operate, or are not completely in keeping with the values of the Scout Oath and Law.
We don’t want to discourage you from advocating for your own Scout, but we do want to give you some insight so you can accomplish what you need to and still maintain good relationships with everyone involved. Most controversies begin with poor communication and/or misunderstanding by one party or the other.
In Scouting, big decisions are made by committees of Scout volunteer leaders. While you may be able to call a Scouting professional at your council office during regular business hours, that professional will typically have to get you in touch with the correct volunteers to begin addressing your need. The point is that things will take time, and you shouldn’t expect a quick response if the issue is complex. You want to allow plenty of time to resolve your issue.
When you advocate for your Scout, you can expect to tell your story over and over in order to bring the Scouting volunteer leaders up to speed so they can help you. It may take a few false starts to get your issue in front of the right volunteer group to resolve it. You may want to recruit a leader from your own unit to help you get connected to the right people and to support your cause.
A spirit of goodwill, or Scout Spirit, will help you a great deal. Scout leaders place high value in their personal honor and truly want to find a good solution to whatever problem is being presented. You can expect them to deal with you in good faith. It is good to think of the people you are dealing with as teammates and partners to resolve your situation.
A FINAL WORD
May you and your Scout have a great time in Scouting!
Last Updated 1/20/2024 – Scouting America name change 1/19/2025
Author : Roger B. Tate
Original Reviewers: Midge Savage & Sandy Payne
2024 Reviewers : Doris Hammer, Susana Isaacson, Kathryn Davis-Lichtenberger & Janet Kelly
Able Scouts 