UFIT
Universal Fitness Innovation & Transformation
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.
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.
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).
Exercise is important for everyone! For people with intellectual disability, the benefits of regular exercise include:
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:
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.
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.
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.
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).
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.
Provide frequent rest breaks as needed
Allow time to complete the task.
Provide lots of cueing and external support
Emphasize and praise what is being done well or correctly.
Provide a daily schedule or log, and practice how to use.
Use technology for memory – smartphone or tablet
Develop visual reminders for use at home.
Provide clear concise goals that are meaningful
Provide immediate positive feedback and correction
Give more time to complete task
Many suggestions for teaching, motivation, and communication can be found in the Special Olympics Athlete-Centered Coaching Guide
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:
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%).
Shorter sessions with frequent rest as needed.
Neurological symptoms (easy fatigability, difficulties in walking, abnormal gait, neck pain, limited neck mobility, torticollis (head tilt), incoordination and clumsiness, sensory deficits, spasticity, hyperreflexia) are experienced gradually before sudden and permanent damage occurs.
(See Rule 2.02 for definition of participation of athletes with symptomatic AAI in sports activities
http://resources.specialolympics.org/Topics/General_Rules/Article_02.aspx)
UFIT recommends seeking medical clearance before participating in a fitness programme as the practitioner should be informed according to the recommendations in their jurisdiction, and counsel the participant and family in the risks of participation.
However, muscle tightness can also be present, so flexibility should be evaluated in each client.
Avoid overstretching muscles in the stretching phase of the fitness programme.
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:
Distinguishing characteristics include:
Lower than average height and/or weight
Central nervous system problems (small head, poor coordination)
Problems with behaviour and learning
Problems with hearing and vision
Use the concept of gorilla marketing – reteach, reteach
Allow time to complete the tasks.
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:
Once the immediate medical issues of TBI are resolved, cognitive deficits can persist. These can include one or more of the following issues:
Break tasks into small steps
Provide meaningful goals
State instructions, then demonstrate task
Have consistent routines, or let client know if changes will occur
Provide a daily schedule, and practice how to use.
Use technology for memory – smartphone, voice organizer,
Schedulers
Slowly lengthen periods of attention to task
Provide directions one step at a time
Don’t forget:
Every person is like every other person, like some other person, and like no other person.
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
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.
Further information/ Recommended Resources
Copyright © 2020 by UNESCO Chair , Institute of Technology Tralee
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