Description #

Meet Reese.

Reese is a 23-year-old male. He is significantly overweight and has little experience being physically active. His father recently had a heart attack and this has prompted his whole family (mom, dad, and younger sister) to really look at their overall lifestyle habits. Reese wants to get healthy because it’s important to his family, but he has no idea where to start. He loves pop music and brings his Ipod and headphones everywhere he goes. He can be overfriendly and may appear to be over confident. Reese is very verbal, although sometimes his words can be difficult to understand for people who don’t know him well. Reese gets frustrated when people don’t understand him, so he has a tendency to say yes and indicate that he understands instructions, when he may not actually be sure about what he is expected to do. He may want to give up quickly if he is not experiencing success right away.

What do I need to know? #

A person with an intellectual disability is characterized as an individual with an IQ under 70 AND significant limitations in adaptive behavior as expressed in conceptual, social and practical skills. Conceptual skills include language and literacy, concepts of time and numbers, and self-direction, while practical skills involve activities of daily living, travel, schedules/routines, safety, use of devices, and occupational skills. Social skills can encompass interpersonal skills, social problem-solving, self-esteem, and ability to follow rules.  Evidence of these disabilities must be present during development, which is PRIOR to the age of 18 years.

Underlying all intellectual disability is a neurodevelopmental disorder (NDD), an impairment of brain or central nervous system development before/during birth or during development, leading to dysfunction.  Many factors can cause NDD including genetic disorders, immune dysfunction, infectious disease, metabolic disorders, nutritional deficits, or trauma.  There are thousands of NDDs of varying degrees of severity, each associated with one or more primary complications including cognitive or sensory impairment, seizures, behavioral disorders, neuromotor dysfunction, cardiac defects and other physical malformations.

Important Facts #

• Approximately 2-3% of the general population has intellectual disability
• Prevalence rates vary for developed versus developing countries
• Although the PREFERRED term is intellectual disability, intellectual disability is called by other names around the globe (learning disability, cognitive disability, mental handicap/disability, mental retardation). Many of these terms are considered offensive by those with intellectual disability, so use of ‘intellectual disability’ is the most respectful choice.
• Some persons with intellectual disability also have a physical disability and are classified as a person with a developmental disability, an umbrella term for physical and intellectual conditions.
• Severity of intellectual disability is largely based on IQ. Approximately 85% of persons with intellectual disability have mild disability

Did you know? #

• Persons with intellectual disability increasingly live in the community with support and services.
• Persons with intellectual disability can live a normal life span
• Many people with intellectual disability show physical signs of aging at an earlier age
• Persons with intellectual disability are at risk for the SAME health effects of aging as general population such as cardiovascular disease, respiratory diseases, and diabetes. Often, their risk is greater because they do not receive the health care or support to live a healthy lifestyle
• Persons with intellectual disability may have ADDITIONAL concerns SECONDARY to their primary disability:
  • Pain
  • Osteoporosis (approximately 25% rate below age of 40 years)
  • Overweight and obesity
  • Medication side effects
  • Behavioral issues
  • Poor oral health
  • Bowel-bladder-gastrointestinal dysfunction
• As little as 9% of people with intellectual disability reached minimal PA guidelines
• Special Olympics is the most popular source of PA for persons with intellectual disability

NOTE

Within a biopsychosocial model of disability, individual inclusion and participation in society are influenced by personal and environmental factors as well as health concerns and/or impairments. Each participant needs to be viewed as an individual and their fitness programme should be designed accordingly with their input and the input of those who know the individual well (e.g., family or direct support staff).

Why Exercise? Why is it important? #

Exercise is important for everyone! For people with intellectual disability, the benefits of regular exercise include:

• Fewer visits to doctor with less medical complications
• Improved balance, muscle strength, and quality of life
• Decreased risk of social isolation and improved mental well-being
• Decreased negative behaviors
• Enhanced self-esteem
• Increased ability to attend school, work and other aspects of community life
• Decreased overweight and obesity

Where do I start? Getting to know Someone with intellectual disability #

Given the individual nature of how people experience disability and impairment, this section will highlight the importance of the consultation phase. Many staff are nervous about their first meeting and this section will hopefully make them feel a little more comfortable and better prepared to manage this first step.

Communication is a two-way process or partnership that involves exchange of information between client and trainer.  The effectiveness of this communication leads to trust and shared understanding, resulting in an appropriate and effective intervention.

Everyone, even those with communication challenges, can communicate in some manner, using language, gesture, pictures or signs, or body language.  It is inherent upon the trainer to best ascertain the most effective ways to understand and communicate with their client.  AND most important, talk to the client at an age appropriate level; do not talk to everyone as if they were a child.

Persons with intellectual disability tend to acquiesce and try to please, so closed questions requiring yes/no responses are problematic.  The person may not understand the question, and be simply supplying the response they think you want.  Open ended questions are also difficult as they require thinking of a number of possibilities, then choosing and structuring a response.  Often, presenting questions in an either/or format (do you like walking or swimming) is a better format.

Use simple short sentences with everyday words and allow time for processing and response.  Be ready to use pictures or photographs for explanation. People with intellectual disability desire and demand respect, so establish eye contact and introduce yourself with a handshake.

Talk to the client, and relay only on the caregiver to support communication or further explain questions and answers.  Be sure to ask the client if it is okay to talk with the caregiver.

The other vital consideration is how YOU communicate to others about people with intellectual disability.  The Ten Commandments nicely defines the major considerations:

1. Refer to ‘individuals or persons with intellectual disability’
2. Do not perceive persons with intellectual disability as eternal kids
3. Depict people with intellectual disability interacting with others with and without intellectual disability
4. Portray people with intellectual disability in positive relationships
5. Show people with intellectual disability living in society, and participating
6. Give people with intellectual disability opportunities to talk about their everyday needs
7. Move the focus of from the parent or caregiver TO the person themselves
8. Demonstrate the people with intellectual disability are NOT sick
9. Emphasize how people with intellectual disability are self-reliant, independent, and individual
10. Do not hesitate to speak and write about people with intellectual disability to make them visible.

The Consultation #

Use the consultation as an opportunity to get to know the participant. In addition to gathering medical information and fitness/ physical activity experience, you will also be focusing on goal setting and learning about participant preferences. In addition to discussing the exercises themselves, ask the participant about how they will get to the fitness centre, and the level of support they need (if any) to access the locker room, and prepare for exercise.

 Note

There may be health-related information that a client with an intellectual disability may not be aware of that is necessary for you to ensure the client’s safety. For example, if the client has atlantoaxial instability, heart disease, diabetes, hypo or hypertonicity, seizures, or is taking any medications, or if the client has osteoporosis, obesity, or pain, these may occasion more information.  For this reason, it is recommended that you gather information from the client’s medical practitioner prior to your session to develop the client’s exercise program.  Begin with a form that you would typically use when screening a new client for exercise (e.g., PAR Q) and then follow up as needed. You may wish to use the Form for Medical Personnel that has been developed for UFIT Explorer as it includes questions that are specific to developing fitness and exercise programmes for people with intellectual disabilities.

Support the client to be as independent as possible. Depending on the individual, this may change over time as they become more familiar with the setting and feel more confident and capable. Some clients may choose to include activities of daily living in their goal setting (e.g., becoming independent in their use of the locker – learning how to open/ close lock without assistance).

When talking about programs, ascertain what the client likes, and give them choices in what they can do.  Provide easy read documents with simplified text, larger font (14 at least), and illustrations to reinforce your instructions.  If the client cannot read, then provide pictures and/or videos to communicate about your program.

See the following SOI links to fitness cards and videos.

Medications & Exercise: What do you need to know? #

Although you will not be administering medication, it’s important that you have a brief conversation with the participant and/or their family member or support worker to ensure they are aware of any side effects of their medications that may impact their ability to take part in exercise and/or specific safety considerations.

Participants do not take medication specifically for intellectual disability; however, they may be on medication for other primary or secondary conditions. For example, if the participant has seizures, thyroid disorder, or behaviours related to their diagnosis, they may be placed on medications that may have potential side effect.  As with any participant who is taking medication, be aware of the potential side-effects and how these may impact participation in exercise and fitness activities. Consult with the participant’s primary support (staff or family) in relation to experienced side-effects to ensure the fitness programme you co-create with the participant is safe and effective.

You can also refer to the Medication Watch List developed by Special Olympics to identify the side effects of the more usual medications prescribed for those with intellectual disability listed on the bottom of the MedFest resource page.

Implications for Exercise #

Although approximately 30% of persons with intellectual disability have no known cause for their disability, the more common NDDs with intellectual disability as a primary complication that you might encounter include Down syndrome and fetal alcohol spectrum disorder.  Traumatic brain injury is an increasing issue for those under the age of 18 years, causing cognitive deficits and delays.

Individual inclusion and participation in society are influenced by personal and environmental factors as well as health concerns and/or impairments. Each client needs to be viewed as an individual and their fitness programme should be designed accordingly with their input and the input of those who know the individual well (e.g., family or direct support staff).

Intellectual Disability with No Known Cause #

You will certainly encounter a person with intellectual disability who has no specific or known cause for his/her intellectual disability.  This individual will have mild or moderate disability, but the context of their other primary or secondary issues will be individualized, so must be defined during your consultation.

Many suggestions for teaching, motivation, and communication can be found in the Special Olympics Athlete-Centered Coaching Guide

Down syndrome #

Down syndrome is a genetic disorder characterized by the presence of an extra chromosome 21. This syndrome occurs 1 in every 700 babies born, and is the leading cause of intellectual disability in world. Down Syndrom is typically associated with:

• mild to moderate intellectual disability,
• physical growth delays and resultant small stature,
• thyroid dysfunction,
• subsequent overweight and obesity
• low muscle tone and flexible ligaments,
• congenital heart defect (40%, but often repaired as newborns),
• vision (38-50%) and hearing (30-50%) disorders,
• seizures,
• no to minimal behavioral issues, and
• atlantoaxial instability

Many persons with Down Syndrom can and do attend school, do paid work often with job coaches, and live in the community with support services.   Notably, many develop Alzheimer’s disease after the age of 40 years (15%), and more at the age of 60 years (50-70%).

Fetal Alcohol Spectrum Disorders (FASD) #

Fetal alcohol spectrum disorders are a group of conditions that occur in a person who mother ingested alcohol during pregnancy.   This spectrum includes Fetal alcohol syndrome (FAS), Alcohol-related Neurodevelopmental Disorder (ARND), and Alcohol-related Birth Defects (ARBD).

All persons with FASD have difficulties in the following areas:

• • • Learning and remembering
    • Understanding and following directions
    • Shifting and unfocused attention
    • Impulsivity and emotional control
    • Communication and socialization
    • Performing daily skills including counting money, telling time, personal safety

Distinguishing characteristics include:

 Traumatic Brain Injury (TBI) #

Traumatic injury to the brain is damage resulting from external mechanical force, or penetration, leading to temporary or permanent structural damage.  The most common causes of TBI in those under the age of 18 years include:

• • • Falls (ages 2-4 years)
    • Traffic accidents (Older children)
    • Abuse and firearm accidents, recreational sports (All ages)

Once the immediate medical issues of TBI are resolved, cognitive deficits can persist.  These can include one or more of the following issues:

• • • Impaired attention
    • Disrupted insight, judgment and thought
    • Reduced processing speed
    • Distractibility
    • Impaired executive function including abstract reasoning, problem-solving, multitasking
    • Memory loss (occurs in 20-79%)
    • Difficulty concentrating
    • Emotional or behavioral problems

Don’t forget:

Every person is like every other person, like some other person, and like no other person.

Monitoring Exertion & Exercise Intensity #

It’s really important that people who are new to exercise learn how to monitor and describe how they are feeling or their response to exercise. One helpful way to do this is to introduce the Rate of Perceived Exertion (RPE) scale.  The smiley face RPE Scale or the OMNI scale (see below for examples of both) may be more suitable for participants with various disabilities than the age-predicted maximal heart rate (220 – age) (Stanish & Aucoin, 2007).

In the beginning, it is also recommended that participants measure their heart rate (using wearable technology such as a heart rate monitor may make this easier!). This information will help the trainer and participant to work together to learn about how the participant perceives their exertion during exercise and may help to inform programming strategies. For example, a trainer may encourage the participant to work towards a specific level of RPE, which can be complemented with information from the HR monitor to measure exercise intensity. Monitoring HR may also be useful in the event that participants are exercising at a level beyond the recommended intensity, which may happen if the participant is very engaged in the activity or trying to make a positive impression on the trainer.

OMNI Scale

Smiley Face Relative Perceived Exertion Scale

Inclusive TIMES: Tips & Strategies for Individuals with Intellectual Disability #

The tips and strategies found within the inclusive TIMES section will help you to create an environment that will support your participant’s participation in physical activity as independently as possible. It is important that you involve the participant whenever possible, along the way to ensure the program that you design will meet their needs physically, as well as emotionally and socially. Introducing a few simple strategies such as offering visual images of the participant’s program will help them to be more independent in completing their fitness programme. Ultimately, they will gain confidence and belief in their abilities (increasing self-efficacy) and experience self-determination (sense of control over their own destiny). This is key to establishing healthy habits that will be adopted for the long term.

Time #

• • • Send a reminder (e.g., text) about appointment or exercise session
    • Shorter sessions and regular rest periods may be ideal to avoid fatigue- Plan for breaks in activities.
    • Introduce regular and consistent exercise routines on the same days/ time each week
    • Begin with lower intensity activities, progressing gradually to moderate intensity as you would in newer participants.
    • Include a cool down (5-10 mins of low intensity aerobic activity) to ensure blood pressure returns to normal & to prevent blood pooling in the legs. Additional time for stretching, which may need modification, guidance and cueing in this population, should be added to the cool down period.

Instruction #

• • • Be patient and understanding.
    • Provide clear, simple instructions in more than one format (e.g., verbal, written, and visual as needed).
    • Break complicated activities into an appropriate number of simple segments- provide visual cues and time to practice each segment before moving on to the next one.
    • In a respectful way, ask participant to return demonstration of the activities to increase learning.
    • Do not pretend to understand a participant; give him/her time to express what they are saying. Respectfully ask them to repeat what they said if you do not understand them.
    • It may help to write down the sequence of an activity or have visual cue cards ready.
    • Use photos to help with recall and write down events. Taking pictures with their cell phones, with permission, is a good way to record steps that they can easily refer back to.
    • Encourage the participant to be as independent as possible. With guidance, have him/her practice selecting his/her own free weights or small equipment and input the settings on the cardio machines. Using a chart for tracking and input can be very helpful.
    • Make behavioural expectations clear. Discuss why some behaviours are inappropriate, and provide clear consequences. Be consistent and set clear rules and expectations.
    • Reinforce acceptable behaviors, and help athlete find a replacement behaviour for inappropriate actions. Speak with caregivers to determine if a replacement behaviour is in place at home.
    • Participant may need to be encouraged to begin or continue with his/her exercise session even when he/she thinks he/she does not want to (e.g., thinking he/she is too tired).
    • Introduce the RPE Scale and teach participant to learn their body’s response to various intensities. This will help them become aware of what intensity is appropriate for the body on any given day.

Movement #

• • • Deconditioned participants and those with heart conditions should start with lighter intensities and gradually progress as their fitness level increases.
    • Determine appropriate equipment for participant to use for their exercise program which can accommodate their ability to get on/off independently, and any assistive devices/bracing that they might have.
    • Resistance training machines are best suited to beginners and participants that have impaired balance, motor control or hypotonicity (loose ligaments and tendons) as machines guide movement patterns, e.g., use chest press machine instead of doing push-ups.
    • Use slow to moderate exercise pace for those with excessive range of motion (ROM) so they can control their joint motion; faster movements may trigger joint dislocation or hypertonicity. Build both concentric and eccentric strength in the muscles around affected joints, working through as full a range of motion as possible.  Avoid sustained stretching where possible.
    • Ask the participant if they have difficulty with performing any activities of daily living. Incorporate these movements within their training programme.

Environment #

• • • Create a lanyard with images of each activity. Have this available for the participant to use on their own.
    • Work with allied professionals to reassure the participant that his/her programme is safe. It’s important that the participant feels safe and supported in his/her fitness programme.
    • Tour the facility, and use a basic map to help the participant remember the location of different areas.
    • If the participant uses an alternate form of communication (e.g., picto-charts, communication device, or personalised system known by their family, friends and support staff), familiarize yourself with their system to build rapport and provide a safe environment.
    • A quiet environment might suit some individuals if they become easily distracted or have other sensory issues.

Support #

• • • Use the consultation to clarify the desired level of support. This is individual and will be unique to each participant. Some may require support staff/family members or use assistive technology/devices, others may not.
    • If the participant has or is at risk of cardiovascular or respiratory conditions, seizures, arthritic changes in the joints with/without pain, and pain, osteoporosis, bowel/bladder issues, or other medical problems, work with his/her health professionals, especially in the beginning, to ensure the participant is exercising at an appropriate and safe intensity (see relevant UFIT Explorer elements).
    • Be aware that participants may have undiagnosed cardio-metabolic conditions (e.g., diabetes or kidney disease). Some possible signs & symptoms are: frequent thirst and hunger, frequent urination, unexplained weight loss, fatigue, and/or blurred vision.
    • Be aware that participants may have undiagnosed osteopenia or osteoporosis. The participant should be instructed and trained in proper body mechanics to insure decreased stress on the spine.  Positions that increase stress on the spine should be avoided.
    • If a participant has behaviour issues, work with him/her and the family/caregivers to recognize triggers and understand their responses. You should co-create a plan with the participant, with input from their caregiver/family to avoid or overcome these triggers. A clear plan for how to address behaviour issues should be developed which is respectful for the participant and maintains their dignity.
    • If participants have low levels of motivation or discipline, consider introducing a healthy reward system. You can record progress on a wallchart to document appropriate behaviour (e.g., check mark for completing exercises or selecting weights on their own) and celebrate success when a participant reaches a specific goal (e.g., offer time for a participant-selected activity such as free- time on an open court, or enjoy a healthy snack after completing the program).
    • Introduce activities with partners to create a positive, fun, enjoyable and motivating atmosphere.
    • Social support is vital to promote a healthy lifestyle, especially for people with ID who are less likely to have this support. Some may enjoy group activities and others may need more encouragement to feel accepted and welcome. Always find out the participant’s preference.
    • Linking with Special Olympics groups may motivate the participant and introduce them to new opportunities. Special Olympics International are members of the UFIT Taskforce. Access Special Olympics resources here:
    • http://resources.specialolympics.org/fit-5/#.WLmvxvKBxP0
    • http://resources.specialolympics.org/Fitness-Cards/#.WLmv2_KBxP0
    • http://resources.specialolympics.org/Taxonomy/Health/_Catalog_of_Fitness_Model.aspx
    • Discuss the participant’s overall lifestyle choices (e.g., nutrition, sleep hygiene), to identify areas where he/she can enhance his/her overall health. For example, does the participant smoke? Eat healthy? Are there changes you can suggest? Often participants with intellectual disability will need support from those within their social circle, highlighting the need for a multidisciplinary approach.

References #

• • • Wullink, M., Veldhuijzen, W., Henny, M. J., van Schrojenstein Lantman- de Valk, Job FM Metsemakers & Dinant, G. J. (2009). Doctor-patient communication with people with intellectual disability – a qualitative study. BMC Family Practice, 10, 82 doi:10.1186/1471-2296-10-82.
    • Farrell, R.J., Peter, R.E., Crocker, M., McDonough, H., & Sedgwick, W.A. (2004). The Driving Force: Motivation in Special Olympians. Adapted Physical Activity Quarterly, 21 153-166.
    • Bray, A. (2003). Effective communication for adults with an intellectual disability. Review of the literature prepared for the National Advisory Committee on Health and Disability to inform its project on services for adults with an intellectual disability. Donald Beasley Institute.
    • Yetunde, M. D., Collett, J., Dawes, H., & Reza Oskrochi, G. (2016). Physical activity levels in adults with intellectual disabilities: A systematic review. Preventive Medicine Reports, 4 209–219.
    • Stanish, H. I., Frey, G. C. (2008). Promotion of physical activity in individuals with intellectual disability. Salud Publica de Mexico, 50, S178-S184.
    • O’Malley, K. D., & Savage, M. (2013). Practical strategies for managing children/ adolescents with neurodevelopmental disorders including FAS or ARND. Irish Foster Carers Association News, 57, 19-20.
    • Rose, J., Perks, J., Fidan. M., & Hurst, M. (2010). Assessing motivation for work in people with developmental disabilities. Journal of Intellectual Disabilities, 14, 147‒
    • LEAD Center, in Partnership with the Job Accommodation Network and National Council on Independent Living. (2016). Effective Communication: Disability Awareness & Etiquette Guide. Guide for Centers for Independent Living and American Job Centers.
    • Murawski, N. J., Moore, E. M., Thomas, J. D., & Riley, E. P. (YEAR) . Advances in Diagnosis and Treatment of Fetal Alcohol Spectrum Disorders: From Animal Models to Human Studies.  Alcohol Research: Current Reviews, 37, p##.
    • Katz, G., & Lazcano-Ponce, E. (2008). Intellectual disability: Definition, etiological factors, classification, diagnosis, treatment and prognosis.  Salud Publica de Mexico, 50, S132-S141.

Further information/ Recommended Resources

• • • Canadian Society for Exercise Physiology (CSEP) (2002). Inclusive Fitness and Lifestyle Services for All disAbilities.
    • Exercise is Medicine, ‘Your Prescription for Health Series’, available at: http://exerciseismedicine.org/assets/page_documents/YPH_All.pdf [accessed 6th April 2016]
    • Harvard School of Public Health, ‘Healthy Eating Plate & Healthy Eating Pyramid’, available at: https://www.hsph.harvard.edu/nutritionsource/healthy-eating-plate/ [accessed 9th May 2016]
    • Martin Ginis, K. A., Evans, M. B., Mortenson, W. B., & Noreau,, L. M. (2017). Broadening the conceptualization of ‘participation’ of persons with physical disabilities: A configurative review and recommendations. Archives of Physical Medicine and Rehabilitation, 98(2), 395-402. doi: 10.1016/j.apmr.2016.04.017.
    • O’Connor, F., Casa, D., Davis, B., Pierre, P., Sallis, R. and Wilder, R., (2013), ACSM Sports Medicine: A Comprehensive Review, Lippincott Williams and Williams, China
    • Pescatello, L., Arena, R., Riebe, D., Thompson, P., eds. (2014), ACSM’s guidelines for exercise testing and prescription, 9th Edition, Baltimore: Lippincott Williams & Wilkins
    • Swain, D., Brawner, C., Chambliss, H., Nagelkirk, P., Paternostro Bayles, M. and Swank, A., eds. (2014), ACSM’s Resource Manual for Guidelines for Exercise Testing and Prescription, 7th Edition, Baltimore: Lippincott Williams & Wilkins
    • WHO Global Action Plan 2013-2020, available at: http://apps.who.int/iris/bitstream/10665/94384/1/9789241506236_eng.pdf [accessed 12th July 2016]

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