The Unit Leader’s Role in Supporting a Scout with a Disability – Inclusion Toolbox

C: The Unit Leader’s Role 

IN THIS MODULE

  • CAN DO ATTITUDE
  • BECOMING AN ACCEPTING UNIT
  • BUILDING EMPATHY
  • BUILDING A UNIT LEADERSHIP TEAM
  • TRAINING & SUPPORTING YOUTH LEADERS
  • COUNTERING MYTHS ABOUT DISABILITIES
  • HELPING VOLUNTEERS FROM OUTSIDE YOUR UNIT
  • OUTING AND ADVENTURE PLANNING
  • SUPPORTING SIBLINGS

Can Do Attitude

As a Scout leader you will continue to be challenged in new and different ways. When a situation arises, do you tend to address the problem in a certain way? If you get stuck, do you adjust tactics or strategy? Do you seek advice from someone else with more experience? When an adjustment doesn’t seem to work, what happens then?  The challenge is still there, and it’s frustrating to the point where everything else is thrown to the side until this issue is solved. A person (Scout or Scout leader) with a disability goes through this same process when addressing a challenge, only there may be physical, emotional, or mental limitations to successfully completing the challenge in a typical way. Sometimes you, and others, have to think outside the box to find a new way. It takes a team effort for the Scout to be successful and ready to conquer the next challenge.  As a Scout leader, you are the center of a team of other adult leaders, family members, council representatives, and counselors.  With their help, you have the ability to ensure that the Scout has the opportunity for success while maintaining a safe and secure environment. Keep this in mind as the goal for this module.

Scouting offers youth an environment in which everyone is challenged and is having fun. They learn about themselves as well as others.  A safe and secure environment is always paramount, and the responsibility to manage the environment is yours. Most Scouts don’t realize they are kept safe and secure in the middle of a challenge.

For the Scout to be successful there has to be trust between a Scout, the unit leaders, and the family.  At first, that trust is built by how you, as a unit adult leader, provide a role model and set an example for other leaders in your unit by living the Scout Oath and Law to the best of your ability. Through this, your unit will refuse to tolerate name-calling, put-downs, discrimination, isolation, or any form of physical aggression. Scout leaders communicate their acceptance of the youth by taking a real interest in each Scout. This is how trust is built. This provides the basic foundation for the Scout to excel and accomplish each goal and then learn from it to accomplish the next challenge. This is a “can do attitude” way of thinking.

You will find a variety of techniques for working with many types of disabilities in Module F.  That information has not been repeated here even though you will benefit from it.

Becoming An Accepting Unit

Selecting the right Scout unit is a very big deal for all involved. By the time a family comes to your unit, they may have experienced a lot of rejection from other groups and experienced situations where their child was not accepted by others. The parents feel the same rejection as the child, so they may be nervous when seeking acceptance from a new group like yours.

 

Every unit has a different culture because leadership is different at each unit. The overall goals are the same, but the process of “how to get there” is different. Therefore, aligning the family’s and the unit’s expectations is an important part of selecting a unit. This is true for all Scouts, not just those with disabilities.

 

Experience confirms that it is not only possible to support a youth with disabilities in any unit, but that this benefits everyone in the unit.  This opportunity exposes the Scout to helpful association in a “typical” environment. This also drives home the fact that the Scout is like the others, only needing to adjust here or there for this particular “thing”.  “Out of the box” thinking will need to be leveraged. You usually find that this Scout will far surpass others in certain skills. Leverage those so that the Scout feels like his or her contributions are valued within the unit.

 

As for the unit, both the adult and youth leaders should get necessary background information on the youth’s condition soon after the youth with a disability joins the unit.  A systematic way to accomplish this is to have a Joining Conference with every Scout that joins your unit. Parents may need encouragement to share information about their child. Parents or guardians are the best people to explain those conditions so bring them in to talk with your unit’s leadership if they are willing. Only discuss with others what has been authorized by the family. Privacy and discretion must be upheld in these situations.

There is more information on Joining Conferences in Module F that you will want to read.

Part of becoming an accepting unit is getting your members, including the families to think of themselves as a unit/patrol/den that succeeds or fails together rather than as individuals.  While American culture values individualism and meritocracy, this has to be balanced against other values like teamwork and fairness. It may seem alright to segregate out high-performing Scouts and give them more high adventure opportunities than others, based on “ability”, or to discourage/exclude some Scouts from events because they may slow down the group.   The danger is leaving out Scouts who would love the opportunity to try something difficult, even if they will need more conditioning than others or will simply have to move slower.  Adult leaders, who may also be parents of high-achieving Scouts, can fall into the mental trap of using “safety” as a reason to avoid inconvenience and not just actual hazards.  If you ask yourself “What could be the unintended consequences?” when you make major decisions, your unit can avoid getting disconnected from Scouting values.

 

Building Empathy

Youth members and unit leaders should understand their responsibility to be friendly, kind, loyal, and helpful—but not overprotective of the youth with disabilities. They need to be empathetic of the Scout, not necessarily sympathetic.

Sympathy is feeling compassion, sorrow, or pity for the hardships that another person encounters.  Empathy is putting yourself in the shoes of another, which is why actors often talk about it.”

Sympathy is easy. Almost everyone will be sympathetic toward a physically disabled youth, especially if the disability is obviously limiting. It is important to remember that youth with disabilities do not want someone to show them pity. We should analyze our own feelings about people with disabilities and then learn by experience in accommodating for their capabilities and limitations. In this way, we can overcome the common reactions of pity, morbid curiosity, being over-solicitous, avoidance, and even fear of people with disabilities because they are “different.”

Sometimes it can be really hard to empathize because the limitation is unseen or “invisible”. Most people with special needs will not have an obvious outward difference in how they look but they may really struggle with tasks others do with ease or may behave in unexpected ways in ordinary circumstances.  Each type of special need or disability has its own set of limitations and challenges.  Modules H through S of this Toolbox provide ample information to help you understand and adapt your unit’s program to different kinds of disabilities.

An effective way to build empathy for a specific disability is to bring in a guest speaker who has the same disability.  (Though tempting, don’t draw undue attention to the Scout with that disability, or put the Scout on the spot to “defend” him or herself.)  The guest can speak from personal experience about living with that particular disability.  Conversing directly with people who have special needs or with others who have experienced the challenges of a certain special need can help you determine the most effective approaches for your Scout to succeed.  But, if you don’t have a resource person at your disposal, this Inclusion Toolbox is intended to help fill the gap and provide information when you need it.

A second way to build empathy is through first-hand experience.  Most disabilities can be simulated in some way, and this simulation can be turned into a unit activity or game.  Even invisible disabilities can be simulated by creating forced distractions or confusing directions.  When the rest of the youth get a taste of what their fellow Scout experiences all the time, it changes hearts and minds.  Though it is not available yet, a catalog is being developed with different activities that can be used on a unit outing or at a larger scale event like a camporee or jamboree. It will be added to Scouting.org when it is ready.

Pay close attention to how other Scouts absorb information about a disability.  The other youth members may be very eager to help, but their assistance to a buddy must be carefully balanced. Too much help hinders the Scout’s journey to accomplish the next challenge. Too little help can make a challenge impossible.  Also watch for Scouts that think they are helping by “toughening up” a Scout with a disability by creating unnecessary difficulties. Closely monitor peer assistance to ensure the right balance of challenge and accommodation is accomplished.

 

Building a Unit Leadership Team

A successful unit needs a proper amount of adult leadership and involvement. Some leaders may find themselves very adept to working with Scouts with special needs and some may not. Most Scout units do not automatically have leaders with expertise working with Scouts with specific disabilities. The adult leaders, along with the families, must work together to ensure enough resources for those Scouts with disabilities. If a troop has three or more youth with disabilities, it is a good idea to seek out adults to become leaders who are already knowledgeable about these disabilities or to get disability-specific training for some existing leaders.  

Find out if your Council or District has a Special Needs and Disabilities Committee that can help you. In a large unit, you may want to appoint a specific adult leader a primary role to serve as the advocate for special needs for your unit. A parent or another support person may be required to attend unit activities, especially those that might require strenuous physical effort, one-on-one help, or those that occur over an extended period of time, such as a campout or summer camp.

 

Training and Supporting Youth Leaders

Adult and youth leaders provide the example for the unit to follow in respecting one another, regardless of whether the Scout has a special need or not. The unit reflects the attitude and values of the leadership. For youth leaders, these are real world examples of what they will face in the adult work environment and in the religious and civic organizations they will serve.  This is an opportunity to learn how to properly demonstrate inclusion and acceptance, and to learn how others think. There are some key points from a leadership perspective to take into account for Scouts that have disabilities. While they apply to adult leaders as well, here are the essentials you need to share with your youth leaders.

 

  • Above all else have patience – patience will take you a long way in most situations.
  • Be flexible. Understand the purpose of the activity and be willing to look for alternate ways to achieve the goal.
  • People can usually tell when others are tense or stressed. Stress can be contagious within a group. (So can grumpiness.)
  • Remember that Scouts with disabilities are people first and their disability is not part of their name. Ask them what words you should use if you need to talk about their challenges. Each person gets to choose how they are identified.
  • Invisible disabilities will take time to understand and you may need to talk to the Scout and adult leaders about it to really understand.
  • Talk directly to the Scout with a special need. Don’t gossip with others about the Scout or gossip about others in front of the Scout. Don’t talk behind anyone’s back.
  • Assume the Scout is capable of doing things. These youth are just as eager for adventure as the others, and they need challenges to have a satisfying experience.
  • Realize these Scouts have the same needs as others. They want their contributions to be valued in the unit. They want to be accepted and to feel a part of the group—to have true friends.
  • Be willing to give good instructions. If a Scout isn’t helping when you expect it, take a moment to make sure he or she understands what is needed. You may need to break your instructions into smaller pieces.
  • Practice giving genuine praise, as often as it is appropriate.
  • Help this Scout when help is wanted. Offer to help, but don’t take it personally if you are turned down. Be glad they want to do things themselves.
  • When help is wanted, do not over help or try to do everything for the Scout. Just like with any other Scout, don’t do what they are capable of doing for themselves. Ask if you aren’t sure.
  • Understand that some youth with disabilities will take what you say literally and won’t get jokes or catch on when you are kidding or being sarcastic. You may need to protect them from being taken advantage of by other Scouts during games.
  • It is OK to be frustrated when things don’t go as they should. Don’t make things worse by outbursts. Calm down, walk away, ask another youth leader to take over for a while, and go talk to an adult leader about how to handle the situation. If the problem really is something the Scout with disabilities could control, then be sure to include him or her in the conversation, and allow this youth to also help find the solution.
  • When in doubt of yourself or about what the youth needs, seek out help, suggestions, and ideas from other Scout leaders. While a youth leader should not go around a Scout to his or her parents, you may need to get an adult leader to ask the parents for more information or guidance that could help you.

Countering Myths About Disabilities

A youth’s adjustment to society depends more on how others react to him than on any special need itself.  If you have only one or two Scouts with disabilities in your unit, you might see some poor reactions among the other youth. These reactions are not as common as they were a generation or two ago because many youth with disabling conditions are now mainstreamed and attend regular schools. In years past, these youth would have been in special schools or homeschooled. Even today, some are homeschooled partly because they were not treated well by peers in regular schools. The best way to overcome these negative reactions is for the leader to treat Scouts with disabilities like any other Scout, to the maximum extent possible.

Even those who sympathize with youth with disabilities may deal with them like they are seriously ill or more fragile than they really are. In many cases, aside from the effects of the disability, the youth is usually healthy. For example, a youth who was born with cerebral palsy might never have been sick a day in his life. The same holds true for youth who became disabled due to disease.  Following recovery, they are disabled but are no longer sick. Youth with such conditions may have some limitations on their abilities, but otherwise they are as healthy as anyone else.

It is best not to make assumptions about a person’s capabilities based on their appearance.  People with physical disabilities or deformities are not likely to have intellectual limitations as well.  People with intellectual/behavioral/learning/sensory disabilities may look and act much like anyone else, so it is easy to demand too much from them.  There are also people with more than one disability, so they have to be understood in the context of the combined effects.

The underlying theme is not to sell a Scout with a disability short.  It is fair to challenge Scouts to make their best effort, considering the disability.  Remember that you want to provide as ordinary an environment as possible for all involved. In doing so, you provide a fertile ground on which fun, knowledge, experience and success can grow.

 

Helping Volunteers from Outside Your Unit

One of your jobs as a unit leader is to be an ambassador for your Scout with a disability when he or she needs to engage volunteers outside your unit.  While these people will have important interactions with your Scout, they weren’t there at your unit activities to get used to your Scout and understand his or her uniqueness.  Day Camp staff, summer camp staff and merit badge counselors are obvious examples, but there are others too.  If your Scout is going to a training course like NYLT, the course director and staff will want to know how to be effective and bring out the best in your Scout.  If your Scout is going on an Order of the Arrow Ordeal, the OA leadership needs to know what accommodations are needed so they can make arrangements. If your Scout is hired for camp staff, the camp director and the Scout’s direct supervisor will want to know about social and communication differences.  If your Scout can go with a contingent to a jamboree, the contingent leaders and senior youth leader will want to be brought up to speed.  When your Scout is getting ready to get an Eagle Scout project approved, there will be district advancement volunteers that want advance information about your Scout.

Module E provides detailed information for how a Scout with a disability can meet advancement requirements as they are written, how to develop alternative advancement requirements when the regular requirements are unreasonably difficult, and how to get formal approval for the exceptions.  The primary responsibility for developing alternatives rests with you as the unit leader and with the family of the Scout with a disability.  Even though you should have trained Scouters available at the district and council level to guide, assist, and advocate; they do not have the personal experience you have with your Scout to come up with the best alternatives for your Scout.  Reach out for these experienced volunteers to help you, but understand that they cannot make decisions for you.

A unique feature of the Scouts BSA program that needs to be addressed here is the merit badge.  To review, merit badge counselors (MBCs) become involved when a Scout is ready to take on a merit badge. While many unit leaders also counsel some merit badges, the MBC role is distinct from the regular unit leadership.  A  Scout notifies the Scoutmaster of which badge the Scout wants to pursue and the Scoutmaster helps the Scout find the right merit badge counselor.   For a Scout with a disability, this means more than finding someone who is technically proficient.  Remember that the trust you have built with the Scout and his or her family – is with you, and not the MBC. This means that you as the Scoutmaster will need to work closely with the MBC to ensure a smooth transition. With the permission of the family, you will need to relay to the MBC what the accommodation needs are and the best teaching strategies you have for your Scout. It’s OK to discuss “out of the box” ways for the Scout to complete the requirements with the MBC. But, if you are dealing with an inexperienced counselor, there may be an issue where the MBC does not understand the scope and limits on their discretion.  If they seem uncertain, you can point them to the BSA training resources for MBCs.  If the MBC feels uneasy about being able to work with this particular Scout after you have talked it over, it is better to look for another counselor than to push a bad situation.  You can look beyond your unit, district, and council for a counselor.

 

Outing and Adventure Planning

The Adventure Plan (TAP) is the planning tool made available to all levels of Scouting by the National Camping Committee.  It can be accessed at bsatap.org. This tool is useful for both regular unit outings as well as high-adventure excursions.  What follows in this section is intended to supplement the TAP.

Scouts with disabilities should be given the same opportunities to participate in high-adventure and “regular” adventure outings as long as: (1) they are willing, (2) they have been cleared by the appropriate health professionals to do so, and (3) there are no unresolvable safety hazards.  If the activity requires physical conditioning in order to be safe, the Scout should be expected to participate in conditioning activities.  However, it not necessary for a Scout with a disability to perform at the same level as everyone else in the group as long as the members of the group can pick up the slack.  For example, there was a Scout that completed a Philmont trek on crutches, with the support of his fellow Scouts.

Another option to consider is offering more than one track of activities on an outing.  For example, if more experienced Scouts are going on a two-day one-night backpacking overnighter, less experienced Scouts could have one day learning pioneering and a day hike the next day, with an overnight at base camp.  Another version is to start the day with a refresher on rock climbing and allow less experienced or skilled Scouts to have more instruction and practice time before beginning climbing in the afternoon.  In keeping with the challenge by choice model, try to have something worthwhile for the Scouts to do if they opt out of the bigger challenge.

Here are some topics to think through when planning an adventure that includes a Scout with a disability.  Obviously, this list covers a broad spectrum of possibilities and only a few items will apply to any particular Scout.  It does not cover details about the actual activity itself, which is already addressed in the TAP.

 

Emergency Medical Needs (beyond usual and customary first aid and event medical provisions)

  • Does the disability carry a special risk of a particular medical emergency?
  • Is there any special emergency equipment that needs to be on the trek or in the camp medical facility? Is this feasible?
  • Do the adults on the trek need special training to deal with such an emergency, beyond Wilderness First Aid Training?
  • Could evacuation for this emergency be accomplished if needed? Can evacuation be fast enough, if required?

Toileting, Dressing, Bathing, and Feeding (see Module R for more details)

  • Is the Scout unable to do such tasks for him or herself?
  • Is a personal caregiver available to assist the Scout with toileting, feeding and dressing?
  • Is this caregiver both medically qualified to provide the services needed and qualified physically and otherwise to participate in the outing?
  • Can a private space be created to provide the needed services to the Scout? g. extra-large tent, space partitioned with tarps, or “family” restroom.
  • Is there any special equipment required and how can it be accommodated?

Accessibility

  • Are the ordinary facilities sufficiently accessible or are special provisions needed? Does the camp need to be inspected in advance?
  • Buildings?
  • Restrooms in buildings? Distances to restrooms?
  • Campsite tent spaces? Platform heights?
  • Campsite latrines? Distances to latrines?

Transportation and Movement

  • Long distance – Vehicles to accommodate wheelchairs?
  • Intermediate distance – Are golf carts or UTVs available to move between program areas? Will regular road vehicles work over the terrain?
  • Short distance – Will powered/unpowered wheel chairs work over the terrain?
  • General endurance – Is the amount of self-powered movement over a day reasonable for the Scout?

Emotional/Behavioral Support

  • Is the sensory environment workable? Are earmuffs or sunglasses sufficient?
  • Is respite/rest/de-stressing space needed? Can it be created?
  • Can time be allowed for breaks for respite/rest/de-stressing?
  • Given facilities, can youth be allowed to stay with parent at night if needed?
  • Who is responsible for assisting Scout in event of a meltdown/tantrum?
  • If Scout is unable to complete the outing, what provisions need to be made to get home to family?

Medications

Many camps have their own procedures for storing and administering medications for youth that will need to be followed.  This list addresses situations where the unit or trekking group needs to manage their own medications.

  • Is it clear who is authorized to administer medications and who is not?
  • Are critically urgent medications like epinephrine autoinjectors accessible at all times?
  • Do medications need special handling? (kept cold/cool/warm/dry)?
  • Do any medications need to be kept secure against unauthorized use?
  • Have arrangements been made to track and verify that medications are taken on the right schedule?

[1] Note: The standard procedures of BSA Youth Protection presume that youth are capable of doing tasks that require personal privacy on their own, while allowing a parent, guardian, or sibling to be present to render assistance.  If a professional caregiver has been authorized by the parents/guardians to serve their child in place of a parent for such tasks, this can be permitted on Scout outings with the approval of the charter organization and the local council.  The attendant would be expected to carry medical power of attorney documents, complete BSA Youth Protection Training, register as an adult with the unit in order to complete background screening and reference checks, and complete the BSA annual health and medical record (health form) appropriate to the event.

 

Supporting Siblings

The siblings of a Scout with a disability have quiet struggles of their own.  Of necessity, they get a disproportionately low amount of their family’s attention.  They tend to feel neglected by comparison even though they are not neglected or mistreated in an objective sense.

As a unit leader, there is little you can do about this situation in general, but you can make a difference when you have two siblings in your unit. Both siblings need to be able to participate in Scouting as individuals on an equal basis.   The natural tendency in a group environment is for everyone to make the more-abled sibling responsible for the less-abled one.  There is a Scouting tradition where we do not ask the parent of a Scout to handle corrective action for their own child on an outing and instead let another adult leader have that responsibility.  The same needs to be true for siblings.

You can push back against the natural tendency of the group by your own actions, and you can give the more-abled sibling your permission and support in resisting this tendency.  For instance, if someone asked the more-abled sibling “Why does your brother act that way?” it is OK to say for the sibling to say “You can ask him yourself.”  Or if someone says to the sibling, “Your sister needs help.” it is OK to say “It’s alright if you want to help her. What do you need to know?”  Good sense will tell you when only a family member knows what to do about a situation.  The goal is to relieve the more-abled sibling of having to be responsible all of the time.

Some of this advice may seem to be contrary to the Scout Law.  The more-abled sibling does need to be taught to respond courteously when asked to take on responsibility for their sibling.  The sibling also needs to know that allowing others to help to their sibling is not a pass on being helpful in general.  “Guilty” is not in the Scout Law. Maybe “thankful” should be.