Disability Basics - Connect With Me

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Disability Defined

Intellectual disability (ID) describes someone with cognitive limitations that are apparent prior to the age of 18.  Developmental disability (DD) refers to conditions that are present before a person’s 22nd birthday and affect typical development in some way.

Intellectual and developmental disability (I/DD) is an umbrella term used to describe people who have ID or DD, whether separately or in combination. The most commonly known diagnoses are autism, cerebral palsy, and Down syndrome, although there are countless others that fall under the I/DD umbrella.

People with I/DD often have difficulty with:

• comprehension
• thought processes
• communication
• behavior

I/DD diagnoses can cause wide-ranging concerns for the affected individual, especially when someone also has a co-occurring mental health diagnosis, which is known as dual diagnosis.  Dual diagnosis can further affect a person’s ability to find and maintain employment or appropriate housing, and makes them more vulnerable to unhealthy relationships.

The ways I/DD on an affect an individual may range from subtle to significant. When a disability is not noticeable to others, it’s called a hidden disability.

Many people with I/DD – especially those with hidden disabilities – don’t want to be perceived as having a disability or they don’t identify themselves as having a disability.  The stigma around disability has led some people with I/DD to develop ways to conceal their differences from others. This can include:

• Saying what they think you want to hear, regardless of whether it’s true or any potential consequences.
• Faking a greater level of understanding.
• Being overly eager to please.

Common Forms of I/DD

Intellectual and developmental disability is a term that applies to any diagnosis that affects a person’s cognitive, physical, social, or emotional development. Implied within the term “development” is an assumption that typical human development occurs prior to adulthood, which is why these definitions state that the person’s disability must have been present prior to 18 for cognitive development (ID) and 22 for all other aspects of development.

There are countless conditions that fall under the umbrella of I/DD. A majority of these conditions are present during pregnancy or at birth, while others might manifest during the developmental years. In addition, some of these conditions are a result of accident, illness, or trauma that impeded the person’s development.

Below is some introductory information about some of the most common diagnoses under the I/DD umbrella. While this information is intended to be informative, it's important to remember that the presentation of disability is unique to each individual. 

Autism spectrum disorder and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors. Some individuals with autism may appear typical and have typical cognition while still having significant social and emotional impairments.

Many people with autism:

• Are uncomfortable with or unable to make eye contact
• Are very sensitive to sensory stimuli that others wouldn’t notice, such as loud noises, bright lights, strong smells, and physical contact
• Engage in self-soothing behavior like hand flapping or rocking, especially when feeling overstimulated or overwhelmed
• Have difficulty processing information, following verbal commands, and reading body language
• Will attempt to run away from confrontation or escape physical or perceived confinement

Cerebral palsy is another umbrella term that refers to symptoms caused by a lack of oxygen at birth. Depending on the circumstance and which areas of the brain were affected by the loss of oxygen, the actual presentation of physical and cognitive symptoms can vary greatly. Typically, people with cerebral palsy have some physical affects, while the cognitive effects can vary significantly and may be absent entirely.

People with cerebral palsy may have:

• Perceptible physical differences that can affect mobility and may appear like a stroke
• Difficulty speaking due to spasticity of facial muscles
• Difficulty regulating emotions
• Difficulty processing information, responding to questions, and formulating complex thoughts

Developmental delay or global developmental delay are also an umbrella terms used to describe the presence of physical, cognitive, social, or emotional delays that can’t be attributed to a more specific diagnosis or syndrome. As chromosomal testing becomes more widely available, testing reveals specific chromosomal differences that would previously just been described as a developmental delay.

Down syndrome is the most well-known and researched type of I/DD, describing individuals who have an extra copy (either full or partial) of their 21st chromosome. This extra set of genetic material leads to specific physical and cognitive differences.

Many people with Down syndrome

• Have recognizable facial features such as almond shaped eyes and a lack of nasal bridge
• Low muscle tone, which can lead to difficulty with clear speech and control of body movements
• Have cardiovascular and respiratory conditions that can make physical restraint more dangerous
• Difficulty processing information, responding to questions, and formulating complex thoughts

Fetal Alcohol Spectrum Disorders (FASDs) are a spectrum of conditions that can arise in a fetus when a mother drinks alcohol while she is pregnant. The effects of FASD are lifelong and can affect physical, cognitive, emotional and social development in varying degrees.  Despite the acronym’s similarity to the one used for autism, the conditions are not inherently related, although they could co-occur in some individuals.

Many people with FASDs have:

• Atypical facial features such as smaller eyes, thinner upper lip, and less pronounced indentation above the upper lip
• Damage to their central nervous system, including their brain
• Difficulty relation their own behavior and emotions, which can include hyperactivity, impulsivity, and explosive outbursts
• Difficulty with judgment and reasoning, which makes them vulnerable to peer pressure and can lead to repeating bad decisions

Fragile X syndrome is a genetic condition that affects a person’s development, especially behavior and the ability to learn. Usually males are more severely affected by this syndrome than females. In addition, Fragile X can affect communication skills, physical appearance and sensitivity to noise, light, or similar stimulus. Fragile X is the most common form of inherited intellectual and developmental disability. The physical effects of Fragile X can be very subtle, so identification is largely based on cognitive, social and emotional symptoms.  

Mental health and dual diagnosis refer to the presence of conditions that disrupt a person’s cognitive, social and emotional development. These conditions can affect how a person thinks or feels, their mood and personality, their ability to relate to others and their daily functioning. When these diagnoses co-occur with an I/DD diagnosis, this is referred to as dual diagnosis. Roughly one-third of people with I/DD will have a co-occurring mental health diagnosis.  

Traumatic Brain Injury (TBI): Where cerebral palsy refers to damage to the brain from lack of oxygen, TBI refers to damage to the brain caused by trauma. Although the cause of the brain damage is different, the effects are very similar. Again, depending on what parts of the brain are affected, someone with a TBI may have a combination of physical, cognitive, social, and emotional symptoms. If the TBI occurs during a person’s developmental years (prior to 22nd birthday), it’s considered an intellectual or developmental disability. If it falls after this cutoff, it’s just considered a brain injury.

Learning to Recognize Disability

If you suspect someone has an I/DD, look for clues in the person’s communication style, behavior, and their interactions with others. Identifying the effects of disability is the first step to establishing appropriate communication.

Things you can observe:

• Does the person seem to have difficulty with telling time, using a phone, or handling money?
• Is the person able to read and write?
• Are they able to follow directions?
• Does it seem to take longer than usual to answer simple questions?
• Are they moving their body in an unexpected way or making unusual sounds?
• Are their social interactions unusual or inappropriate?
• Do they seem to have a short attention span or be unusually distractible?
• Does the individual get frustrated easily?
• Do they communicate indirectly through their caregiver or others?
• Does the person appear to be easily influenced or manipulated with decision-making?

Questions you can ask:

• Did you go through special education or have an IEP in school?
• Do you have a guardian or a rep payee?
• Do you have family or staff who help you at home or in the community?
• Do you have a case manager?

Disability is a continuum with varying combinations and degrees of physical and cognitive effects.

Best Practices for Better Interactions

Imagine you are talking to someone who doesn’t appear to have a disability, doesn’t want you to suspect they have a disability, and they aren’t interacting or behaving in a socially appropriate manner.

In order to avoid escalating these potentially stressful situations, we’ve compiled the following tips to help you interact more effectively.

When the individual is under duress

• Never touch someone with I/DD unexpectedly or without permission, which can cause behaviors to escalate.
• Some people with I/DD may not recall even simple personal information.
• Acting inappropriately could be a sign of stress. Self-regulation of emotions and behavior is often difficult for people with disabilities.

Recognize behaviors related to disability

• People with I/DD may make uncontrollable noises, movements, and gestures that may intensify in stressful situations. This can include verbal tics like mimicking and repeating.
• When under stress, people may use self-calming behaviors such as rocking back and forth, flicking fingers, humming or buzzing.
• Avoid interfering with disability-related behaviors as doing so can cause the situation to escalate.

Be mindful of what and how you are communicating

• Use respectful, age-appropriate language (i.e. don’t talk to adults like children).
• Pay attention to the tone, pitch, and volume of your voice.
• Speak slowly and clearly using simple words.
• Identify yourself clearly and make sure the person knows your role.
• Keep instructions simple with no more than two steps at a time.
• Avoid complex open-ended or leading questions that require abstract reasoning abilities.
• Allow extra time to respond– be patient and don’t interrupt.
• Gauge comprehension by repeating questions and rephrasing them.
• Some people may need to communicate using pictures, symbols, and actions, or with facilitation from their caregiver or friend.
• Avoid gestures and postures that might be perceived as threatening or intimidating.

Minimize sensory stimuli around you

• Whenever possible, try to move to a calm, quiet, and dim environment.
• Be aware of sensory things that can increase stress: bright or fluorescent lights; loud voices, sounds, or background noises; strong smells; busy or chaotic environments; and other physical sensations.
• Be aware that sensory-based stressors can be overwhelming for people with I/DD and make them try to escape or run away.

REMEMBER

• Disability is not always perceptible or visible.
• Many people with I/DD drive cars, live on their own, and hold jobs.
• Disability is unique to each individual, even those with similar diagnoses.

Hidden Disabilities: Considerations for Law Enforcement

When there are conflicts between people with disabilities and law enforcement, more often than not a hidden disability is a factor.

On one side of the interaction is a the person with a hidden disability who may not identify themselves as having a disability or may not want to be perceived as having a disability. Regardless of any desire to conceal aspects of their disability, the individual may still exhibit disability-related behaviors that are outside of their control.

On the law enforcement side, a lack of awareness of the presence and influence of hidden disabilities can lead to the assumption that an individual is being willfully or intentionally disobedient. A few simple questions can help officers easily determine if disability might be a factor and adjust their approach for more effective communication.

Keeping people safe

Adults with I/DD are particularly vulnerable to mistreatment, abuse, neglect, and exploitation (MANE).

This can include, but is not limited to:

• unnecessary confinement or restraint
• emotional, physical and sexual abuse
• exploitation of property, assets, and finances
• caretaker neglect

If you suspect an adult with a disability is potentially unsafe, you should always report your concerns to law enforcement and the appropriate agencies will complete an investigation. 

Mandatory Reporting in Colorado

In 2016, Colorado’s mandatory reporting law was revised to extend protections to people with intellectual and developmental disabilities when mistreatment, abuse, neglect and exploitation (MANE) is suspected. This is a momentous step toward decreasing the rate of victimization of Coloradans with I/DD.

In addition to law enforcement and first responders, many other professionals are considered mandatory reporters under Colorado law. To determine if you are a Mandatory Reporter, visit www.arcjc.org/whoaremandatoryreporters.

According to the law, any Mandatory Reporter must report their concerns to a law enforcement agency within 24 hours of the incident. The person who makes the report must be the person with first-hand knowledge of the concerning incident.  Situations that lead to a mandatory report can include directly observing the mistreatment of an at-risk senior or adult with I/DD, or just the suspicion that a person is being mistreated or is at-risk of mistreatment.

Even if you are not considered a Mandatory Reporter, we ask that you help us keep vulnerable adults safe by always reporting your suspicions to appropriate agencies.

According to the law, mistreated or mistreatment means: (a) Abuse; (b) Caretaker Neglect; or (c) Exploitation

Abuse means any of the following acts or omissions committed against an at-risk person:

1. The non-accidental infliction of bodily injury, serious bodily injury, or death;
2. Confinement or restraint that is unreasonable under generally accepted caretaker standards; or
3. Subjection to sexual conduct or contact classified as a crime under this  title.

Caretaker Neglect means neglect that occurs when adequate food, clothing, shelter, psychological care, physical care, medical care, habilitation, supervision or any other treatment necessary for the health or safety of an at-risk person is not secured for an at-risk person or is not provided by a caretaker in a timely manner and with the degree of care that a reasonable person in the same situation would exercise, or a caretaker knowingly uses harassment, undue influence, or intimidation to create a hostile or fearful environment for an at-risk person. 

Please note that mandatory reporting of neglect only applied to situations where the at-risk person is being neglected by another party. Concerns related to self-neglect are not criminal in nature and should be reported to Adult Protective Services rather than law enforcement. 

Caretaker means a person who:

1. Is responsible for the care of an at-risk person as a result of a family or legal  relationship; 
2. Has assumed responsibility for the care an at-risk person; or
3. Is paid to provide care or services to an at-risk person.

Exploitation means an act or omissions committed by a person who:

1. Uses deception, harassment, intimidation, or undue influence to  permanently or temporarily deprive an at-risk person of the use, benefit, or possession of anything of value;
2. Employs the services of a third party for the profit or advantage of the person or another person to the detriment of the at-risk person;
3. Forces, compels, coerces or entices an at-risk person to perform services for the profit or advantage of the person or another person against the will of the at-risk person; or
4. Misuses the property of an at-risk person in a manner that adversely affects the at-risk person’s ability to receive health care or health care benefits or to pay bills for basic needs or obligations.

Local Resources

The Arc of Jefferson, Clear Creek & Gilpin Counties. Nonprofit community-based advocacy organization focused on protecting and promoting the rights of people with I/DD. (303) 232-1338; www.arcjc.org.  

Developmental Disabilities Resource Center (DDRC). Government funded nonprofit that manages and delivers government services for people with I/DD living in Jefferson, Clear Creek, Gilpin and Summit Counties. Part of Colorado’s Community Centered Board (CCB) system, which is charged with monitoring services to individuals provided by Program Approved Service Agencies (PASAs) throughout the state.

Colorado Crisis Services Confidential and immediate Support 24 hours/day, every day (844)493-TALK (8255); www.coloradocrisisservices.org

Jefferson County Adult Protective Services, Adult Protection Hotline (303) 271-4673

Jefferson County Child Protective Services, Child Abuse and Neglect Hotline (303) 271-HELP (4357)