P: Understanding Intellectual Disability

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OVERVIEW

Intellectual disability (ID)  can affect the ability to process information quickly, learn new material, remember what was learned before, interact socially, and make decisions for everyday life. Historically, ID was also called “cognitive disability.” Though there are a variety of underlying causes for intellectual disability, the preferred language is to use “intellectual disability” as an inclusive singular term. A Scout leader does not need to know the cause to support a Scout with an intellectual disability. Scouts and leaders with intellectual disability sometimes have other disabilities as well.  For multiple disabilities, you should look at other Inclusion Toolbox modules to find what you need to address the other needs of an individual Scout.

For many Scouts with intellectual disability, Scouting can be a profoundly effective program environment that supports their social and emotional growth, self-confidence, life skills, physical health, school-based individualized education plan (IEP), and medical or therapeutic treatment goals. In addition to youth, Scouting programs serve people with ID that are well beyond the age we usually think of as a youth.  When you see the term youth or Scout in this module, remember that this can also mean an adult participant with ID.  Some adult Scouts may be better served in a special-purpose unit with others with similar disabilities.  They can continue to earn ranks and awards at their own pace and ultimately earn the Eagle Scout rank, regardless of age.

In the spirit of meaningful inclusion, equity, and diversity, every Scout should have the opportunity to be part of a traditional Scout unit, while honoring the choice of any Scout to participate in a special-purpose unit if that works better for the Scout.  There are many reasons why a person with ID might want to participate in a traditional, i.e. mainstream, Scout unit rather than a special purpose unit.  For example, a person may be more comfortable being a Scout alongside siblings or cousins, familiar people from school, or friends from their faith group.  Another reason for choosing a traditional Scout unit is because the person is already familiar with the meeting location from other activities, or it is just a convenient or accessible place to go for regular meetings. 

CHARACTERISTICS

Like all Scouts, Scouts with intellectual disability have a wide range of strengths, challenges, interests, behaviors, and communication skills.  They can have gaps in basic life skills relative to their age, formally called adaptive behaviors. These behaviors are part of every facet of daily living. Examples include picking out appropriate clothes to wear, making a purchase, working a vending machine, following school rules, taking turns, waiting in a line, etc.

Scouts with intellectual disabilities can be literal learners and frequently struggle with making inferences, and picking up on the social context.  They may or may not behave impulsively.  Many Scouts with ID will meet the BSA criteria for Registration Beyond the Age of Eligibility (RBAE), which is participating in Scouting at an older age than is allowed for other youth.  RBAE is explained in more detail in Module E.

The individual abilities and challenges of a Scout need to be considered when developing a plan for success.   It is important to remember that Scouts with ID can and do learn even if their learning takes place at a slower rate and complexity throughout their lifetime.  They experience the same hopes and emotions as people without intellectual limitations.  They often express the same age-related interests as age peers.  They want to be respected, included, and experience activities.  They need to do all that they can, in order to be all they can be.

While this module discusses intellectual disability in general terms, please understand that there is a wide range of ability within this class and each individual’s needs need to be addressed in an individual way.  For example, individuals with milderintellectual disability can live independently as adults and master basic academic and social skills.  With appropriate training they can hold competitive jobs, own businesses, begin and maintain adult relationships/marriages, be parents, and actively participate in community life.  Those with moderatedisability can learn to take care of their personal needs, perform simple tasks, and engage in supportive living and employment arrangements.  Individuals with more substantial delays can require the on-going support of caregivers.  Educational efforts are often directed at providing communication opportunities and experiential activities that develop functional life skills; for example, washing hands, dressing, brushing teeth, and toileting.

SAFETY CONCERNS

Some Scouts with intellectual disability may need close supervision if they are at increased risk for accidents and injuries.  This may include getting lost, wandering off, or not recognizing dangerous situations for what they are.  Some examples include oncoming traffic, agitated or defensive wildlife, hazardous weather, fire, and thin ice. Delayed reactions can turn something seemingly safe, like having a ball thrown to the Scout in a game, into a hazard. This is a topic to discuss with a Scout’s family or caregiver when the unit leaders are getting to know the Scout.

In addition, some Scouts may struggle to communicate when they are injured or in pain, even with a broken bone, deep cut, or burn; so pay close attention and be sure to further inspect and ask clarifying questions if there may have been an injury.

CAREGIVER FATIGUE

Some Scouts with intellectual disability have needs that require extra support, sometimes significantly extra support, in their everyday lives and at Scouting activities. Scout leaders need to recognize that families of these Scouts are under unusually heavy demands to care for their children while earning a living and meeting the other obligations of regular life.

Another difficulty for these families is the constant struggle with schools, agencies, and insurers to get the resources their child and family need to get by, much less flourish.  These families may also struggle economically to pay for therapies, care, and resources needed to properly support their family member with ID.

This reality is hard to accommodate with a volunteer-driven organization like BSA.  To the extent we can, we want to support these families by allowing them to be in Scouting without obligating them to serve as Scout leaders or requiring them to provide the adapted program for their own children.  As discussed in Building a Unit Leadership Team in Module C, the unit leadership may need to recruit some additional non-parent adults to support Scouts with ID.

GENERAL SUPPORTS

As explained in Module F, it is important to involve the Scout, family, and Scout leaders in developing the best path to meaningful Scouting engagement.  For Scouts with intellectual disability, the perspectives of health and education professionals that are familiar with the individual are helpful as well.  The first step is for leadership to get to know the Scout and become familiar with the general nature of the disability with a Joining Conference.  The best path for the Scout might not include traditional Scout advancement like you are used to.  If you have not already done so, you will also want to look at the sections on Individual Scout Advancement Plans, and Registration Beyond the age of Eligibility in Module E.

Your attitude is important to success. Be patient, caring, empathetic, supportive, and understanding. Scouts with ID are often aware of their limitations, but they have the same desires and fears related to success and achievement as other people their age.  They also may have a harder time understanding how well they must do to meet the performance expectations for a certain goal.

Scouts with intellectual disability are at greater risk of bullying, harassment, manipulation, practical jokes, and being made fun of.  More subtle, but equally harmful, is to treat Scouts with ID as servants or “mascots” because they are compliant.  Do not ask a Scout with a disability to do something for you when you would not ask that of anyone else.  Pay attention to how your Scouts interact with each other and don’t let anyone take advantage of anyone else. 

The best practices when dealing with Scouts with intellectual disability can be summarized as follows:

  • Be clear and concise.
  • Use simple language and short sentences.
  • Demonstrate tasks whenever possible.
  • Break down directions into small steps and repeat as necessary.
  • Use flip cards, posted signs, checklists, and other visual cues for safety items (like in axe yards), schedules, and routine processes (like dishwashing)
  • Make things easy to read with pictograms and simpler text for signage and written instructions
  • Provide multiple opportunities for practice.
  • Don’t talk down to the Scout or use a louder voice.  They are not hard of hearing and baby talk is not clearer.
  • Respect their chronological age and interact like you would with anyone else their age.
  • Celebrate small gains and progress towards intermediate goals.

TYPES OF ADAPTATIONS

The term adaptation is used here to include anything that is done to allow a Scout to participate fully in the program. “Adaptation” is a different concept from “adaptive behavior,” discussed earlier, even though they sound similar.  It applies to any intervention (change from the typical way of doing things) that levels the playing field.  In reality, adaptation is an umbrella term for two different kinds of interventions: accommodations and modifications.

Adaptations are typically tailored to the individual.  The factors include:

  • Age
  • Individual strengths and weaknesses
  • Desired outcomes
  • Reasons for participation
  • Resources available

Providing an individualized program, for example, will usually take more resources in terms of people and time than group programming.  One of the advantages of a special-purpose Scout unit, where the members have similar functional abilities, is being able to leverage resources more efficiently by providing an adapted program to more than one Scout at a time.

There are many ways to ensure that an individual benefits from participating in Scouting.  Working together; adult leaders, youth leaders, and families can provide consistent and sustainable ways to maximize the involvement of all Scouts.

Accommodations

Accommodations do not change what is learned. However, the way the learning takes place is changed.  Accommodations usually change the learning environment in some way.  For example:

  • the task may be broken down into smaller parts
  • the task may completed over an extended period of time
  • methods of response may be changed
  • the physical environment may be changed
  • frequent repetition, prompting, or clarification may be needed
  • individualized instruction
  • extended practice
  • special seating arrangements
  • enhanced buddy system
  • schedule cards and reviews
  • establishing a process for asking questions
  • extra time for practicing games or demonstrations

Begin by assuming the Scout can accomplish the task and give him or her a chance to do so, even if it takes multiple attempts.  Once an inclusive attitude is adopted, it may be readily apparent what accommodations are or are not needed.  You can and should talk to the family about strategies used at school and at home that you can adapt to Scouting activities.  You may also find good ideas in some of the other modules of the Inclusion Toolbox that deal with related disabilities.  If you need personal assistance in developing a success plan, contact your Unit Commissioner and/or Council or District Special Needs Committee. If you cannot find the answer or resources you need, you can contact the BSA National Special Needs and Disabilities Committee (SpecialNeedsChair@scouting.org).

Modifications

Modifications on the other hand, change the task or activity to bring the opportunity within the reach of a Scout with significant limitations related to a disability.  There is a place for program modifications in Scouting.  Scouts with more significant disability can benefit from being encouraged to participate in some manner in as many activities as safely possible, even if it is unlikely that they will master a skill.  For example, a Scout could have the opportunity to go along in a canoe on a float trip even if paddling or steering the canoe is too difficult.  Another example would give the Scout the opportunity to create the wraps to form a lashing even if someone else has to tie the starting or ending knots.

Scouting can benefit those who do not place much emphasis on advancement, regardless of ability level.  They will still grow socially, emotionally, and cognitively from the varied experiences and community and peer interactions that are inherent in a strong Scouting program.  Unit leadership needs to be open to working with parents and youth to explore ways to be inclusive and provide benefit to the Scout.

APPROACHES TO ADAPTATION

For discussion, we are breaking adaptations for intellectual disability into nine categories.  An adaptation can be used by itself or in combinations, as best meets the needs of the Scout and the situation.  They can be used for a specific task or as part of a regular ongoing program.  These adaptations could be either accommodations or modifications depending upon the extent of the changes.

  • Quantity – Reduce the number of items or activities the Scout is working on at any given time.  Allow for additional practice before moving on.  For example: Work on only one phrase of the Scout Oath at a time.
  • Time – Increase time allotted for a task.  For example: Break task down and allow additional time.  Use time reminders to help the Scout stay on task or help prepare for change of activity.
  • Level of Support – Increase personal assistance to maintain focus and prompt use of a specific skill.  For example:  Help youth establish self-organizing skills by asking “what should you do next?” Develop a checklist for the Scout to mark off as tasks/steps are completed. Assign a “peer buddy,” a fellow Scout that stays with the Scout with a need to help him or her manage.  See Module E for a fuller explanation.
  • Input – Adapt the way instruction is delivered.  For example: Use visual aids, hands-on activities, small group practice, or pre-teach key concepts or terms.
  • Output – Adapt how the Scout responds.  For example: Allow scribes and verbal responses rather than writing out answers.  Use multiple choice or yes/no questions.  Have Scout demonstrate a skill or use a drawing to explain an activity.
  • Participation – Adapt the extent to which a Scout is actively involved in a task or activity.  For example: Reduce the time a Scout is required to pay attention, letting him or her attend to another activity.  Involve the Scout in setup, or distribution of materials, or another meaningful task.
  • Difficulty – Adapt the skill level, or type of task.  For example: Allow use of cue cards and memory aids.  Have a Scout work on simpler First Aid skills or knots.  Break tasks down into extremely small steps.
  • Alternate Goals – (usually utilized for those with moderate to severe intellectual disability) Adapt the goals or outcomes while using the same materials.    For example: While studying maps, the expectation is that most Scouts will be able to locate all the features listed in the legend.  An alternate goal for a Scout with a disability could be able to identify one prominent feature, such as water or a road.
  • Substitute Curriculum – (usually utilized for those with moderate to severe intellectual disability and those who participate in Scouting primarily for social and communication interaction) Provide substantially different materials and instruction.  For example: A Scout with very limited communication and adaptive skills enjoys the ceremonies involved in the unit’s programs.  This Scout then attends unit activities and meetings and participates in opening and closing ceremonies, but may spend much of the time at these events engaged in an individual activity, not impacting over-all programing.

INSTRUCTIONAL STRATEGIES

Leaders should remember that Scouts with ID may have delayed functional life skills, such as time and money management, organizational skills, social skills, and self-care and hygiene.  When these skills come into play in group settings and form the foundation blocks for many skills that will be taught, leaders may need to support the Scout with ID to work through these basic skills and the starting part of a task.

Strategies usually refer to methods or techniques used by instructors, while adaptations refer more to actions on the part of the learner.  A list of instructional strategies is just that – a list. Think of it as a menu of options.  Some options will work with one Scout, but not another.  Even with the same Scout, a strategy may work at some times but not others.  You want to use what you know about the Scout, what you learn from the family, and what works at school to guide your choices, but it is more important that you keep trying to find effective strategies than it is to succeed in your first efforts.  Just as you strive to be patient with the Scout, be patient and forgiving with yourself also.  All of these strategies flow from a foundation of trust between the teacher, the learner, the family, and the medical or educational professionals that support the Scout.

Strategies to consider when working with Scouts with intellectual disability include:

  • Establish consistent routines and expectations for each meeting.
  • Establish a clearly defined and posted system of behavior rules and consequences.  These can be referenced as a cue to the Scout to redirect attention to on-task behavior.  A card or picture can serve as a visual reminder to use appropriate behaviors, like raising a hand, or lowering a voice.
  • Tell Scouts in advance what they will learn.
  • Use a combination of oral, visual, and written instruction.  Repeat often.
  • Allow frequent breaks
  • Break tasks down into component steps. Focus on one at a time.
  •  Encourage self-monitoring techniques such as checklists, timers, and visual calendars.
  • Teach one concept at a time.
  • Encourage the Scout to quietly talk to himself or herself while learning or practicing a skill. This is an example of a metacognitive technique, i.e. one in which the Scout thinks about how he or she is thinking or learning. Practical examples are asking yourself questions as you are thinking, reciting back instructions while you are doing something, reciting back rhymes or memory aids for steps, writing down notes, or repeating back prior knowledge.
  • Allowing for extra practice time.  Plan to reteach the skill component frequently in order to maintain and extend knowledge.
  • Use interactive small group learning situations
  • Involve peers, buddies, parents, leaders, and others to provide review and practice opportunities.
  • Provide opportunities for problem solving, reasoning and real-life application of skills.  This helps maintain and transfer information.
  • Provide Scouts an opportunity to calm down when they become frustrated or overstimulated and regain control of their environment. See Self Removal in Module F for more on this topic.
  • Offer praise for good effort.  Do not make comparisons to others or to past efforts.

ADVANCEMENT

To reemphasize a point from the explanations in Module B and Module E, advancement is just one method of Scouting and not a mission of Scouting.  It should serve the needs and healthy development of the Scout, not the other way around.  Even without disabilities, there are some Scouts that are highly motivated by earning awards and recognitions and others that are not motivated by this at all.  The others participate in Scouting for fun, adventures, friends, etc. 

We shouldn’t exclude Scouts with intellectual disability from pursuing ranks and awards if the traditional advancement system is attainable or can be made to work for them.  At the same time, we have to recognize that for Scouts with more significant disability, many of the traditional advancement tasks may not be possible no matter how much adaptation is provided and how much time is allowed.  For these Scouts, the Scouting program emphasis needs to shift to providing life experiences and developing functional living skills.  We do not want to lose sight of the fact that adaptations allow Scouts to be part of the entire life of the unit.  We also need to recognize that a Scout may benefit from simply “being part” of a Scout activity, even when he or she isn’t able to do everything for the activity.  In situations like this, a unit may want to emphasize the presentation of event patches at ceremonies alongside the usual ranks and badges

For Scouts with ID that want to pursue ranks and awards, but have unusual challenges achieving them, there are a variety of adaptations available within the BSA advancement system.  In Cub Scouting advancement, Scouts do not have to do something correctly or completely in order to receive credit for doing their best.  To receive advancement credit in the other programs, a Scout must complete a requirement as it is written, or complete an alternative requirement that has been approved in advance, usually by the council advancement committee. Those procedures are covered in Module E and are not being repeated here.

Scout advancement is supposed to be both a means of “certifying” an accomplishment and a motivation to keep making progress.  The challenge for a Scout with ID is that it takes more time to master skills than for others and the work needs to be done in smaller pieces.  The usual recognitions may come so far apart that they lose their value as a motivator.  A possible solution is micro-recognition.  Unofficial recognition items and events are created to celebrate steps along the way that would not ordinarily receive special attention.  For example, a hanger can be made for the uniform that is used to attach beads or ribbons that signify completion of individual advancement requirements or portions of multi-part requirements.  This strategy is the same as what we do with Cub Scout adventure belt loops and with Scouts BSA merit badge sashes, it is just more finely grained.

Before embarking on this path, the idea needs to be discussed with the Scout’s family to make sure it is respectful and actually beneficial to the Scout’s healthy development.  The motivational benefit of more frequent recognition needs to be balanced against the preference of the Scout or family to be treated like everyone else.

INCLUDING ADULT SCOUTS

Scouting can and has been used effectively by supportive living-focused organizations as part of their programs to serve adults with intellectual disability.  It is worth noting that these adults may behave in ways that seem immature or child-like, but they are not children and rarely see themselves as children.  Since they have a blend of adult and youthful interests, in many cases these Scouts function best in a special-purpose Scout unit with others of comparable age and ability.

With appropriate support from the other Scout leaders, there are also situations where an adult with a disability can function as an adult volunteer with a Scout unit.  The youth in the unit benefit from the experience of an adult who is different from most and they learn to appreciate people despite their differences.  BSA youth protection policies provide appropriate training for adults with ID to be part of a Scout unit.  This approach can be an effective way to allow an individual adult to share in the Scouting experience when there are not enough similar people to form a special-purpose unit.

ACKNOWLEDGMENTS

The Boy Scouts of America would like to thank Special Olympics North America and The Arc for reviewing the contents of this module for accuracy and usefulness.

Last Revised 7/3/2021