How can we help the person to develop a sense of
health and well-being?

Mark Durand has said, "People tend to get immature when they don't feel well."  How often have you experienced a general decline in your mood or your ability to empathize with others when you did not feel well?  When we are sick, we are not ourselves.

Many people who experience disabilities exhibit difficult behaviors because they do not feel well. The sudden appearance of behavior problems may be a signal that the person's health is deteriorating.  Illnesses as common as a cold or seasonal allergy can result in behaviors as inconsequential as grumpiness or as serious as head banging.   Ruth Myers, MD, James Salbenblatt, MD, and Melodie Blacklidge, MD provide helpful examples of difficult behaviors and potential physiological or psychiatric causes.   

Ask, "Is the person experiencing a physical illness?"

  1. Are the person's caregivers responsive to this illness or is the person expected to carry on as if nothing were wrong?
  2. Is the person uncomfortable?  For example, is she hot or cold?  Is she experiencing constipation?  Does she have a tooth ache? 
  3. Is the person eating well?
  4. Is the person getting a full night's sleep?
  5. Does the person have a history of seizures that demand regular attention?
  6. Are the person's medications carefully monitored? Is the person experiencing any negative side effects from these medicines?
  7. Is the person hurting himself?  If so, what part of the body is the person hurting?  Is it possible that part of the body hurts?
  8. Does the person have a good working relationship with a primary health care professional?
  9. Has anyone taken the time to organize the person's medical information in an accessible and complete way?

Consider these additional questions, offered by David McDonald or Oregon's Disability Activists Work Group (DAWG):

  1. Has the person had all of the recommended screenings for serious medical conditions (e.g. cancer)?
  2. Does the organization employ a person who has enough medical background to know which tests should be conducted and how to interpret the results?
  3. Has the person been denied important screenings because of a refusal by the funding source to cover it?

Can you think of other questions?  What are they? Make a list of questions and try to answer each one of them very carefully.

If the person is experiencing a physical illness and you need help understanding what the illness is and how to treat it, check out the Merck Manual Online, a helpful resource for medical conditions of all kinds.

In February 2002, Surgeon General David Satcher, MD released a scathing report about health care in America for people who experience developmental disabilities.  The report can be downloaded by clicking here --
Closing the Gap.  An updated report by Surgeon General Richard Carmona, MD, can be downloaded by clicking here -- A Call To Action.

Ask, "Does the person have a mental health diagnosis?" 

People who experience disabilities are no less likely to experience mental health issues as anyone else.  In fact, in some cases, people may be
more likely to experience a mental health diagnosis (e.g., depression) than most other people in the general population.

A mental health issue may be at the root of a person's difficult behaviors.  Consider these questions adapted from the work of Stephan Schwarz, M.D. and Stephen Ruedrick, M.D. (1996):

  1. Is there a significant change in the person's behavior or mood which occurs in all settings rather than some settings?
  2. Is there little or no improvement in the person's behavior despite the availability of consistent, high quality supports?
  3. Has the person experienced a decreased ability to adapt to the demands of daily living (e.g., a deterioration in his ability to take care of himself)?
  4. Has the person experienced decreased involvement with other people (by her choice)?
  5. Has the person lost interest in formerly preferred activities?
  6. Has the person shown some impairment in his or her perception of reality (e.g., is responding to internal voices, or shows beliefs which are obviously false)?

Can you think of other questions?  What are they?  Make a list of questions and try to answer each one of them very carefully.

Check out the Network of Care and Supports for Behavioral Health and Mental Retardation Services web page for great links to various mental health sites.

Ask, "Is the person experiencing Post Traumatic Stress Disorder?"

I believe that a significant number of people who experience disabilities are experiencing PTSD.  Ruth Ryan, M.D. (1994) estimates that 61% of the people with developmental disabilities living in a hospital setting met the criteria for PTSD.

According to Al Vechionne, Ph.D., traumatic events may include one or more of the following:

  • Separation from primary relationships at an early age.
  • Frequent moves from residential placements.
  • Institutionalization.
  • Physical abuse.
  • Verbal abuse
  • Neglect
  • Degradation
  • Loss of parent, sibling, or significant other
  • Significant medical problems/procedures
  • Extended hospitalizations

Additionally, in the hands of professionals, people may have been exposed to one or more of the following procedures:

  • Time out
  • Over correction
  • Physical Restraint
  • Facial screening
  • Ammonia or other aversive substances

According to Legare, Ryan and Lewis Herman (1998), typical reasons for referral include:

  1. Unexplained (inexplicable) bouts or episodes of anger;
  2. Inexplicable episodes of screaming, throwing things, or destruction of property;
  3. Out of proportion kinds of reactions to normal changes or stressors.  (People who have an out of proportion reaction to a moderately stressful but not catastrophic situation may have had something worse happen to them in the past that is stirred up by the event);
  4. Rage attacks;
  5. Abrupt physical assault (often toward the people they like the most);
  6. Being extremely afraid (terrified) at times of people they know and trust;
  7. Calling someone they know by a different name;
  8. Appearing unfocused or "not with it" (sometimes it is thought that people are having seizures);
  9. Sometimes behaving like they are somewhere else;
  10. Dissociative experiences; an inability to respond to people during these experiences.

Sound familiar?

If you suspect the person you are supporting is experiencing PTSD, it is very important to seek qualified help.  You will need the support of a good psychiatrist who has an understanding of PTSD and the implications of PTSD for people with developmental disabilities.  You may also wish to obtain a copy of my handout entitled, Supporting a Person with Post Traumatic Stress Disorder which can be downloaded from this site.

Question #3:
How can we help the person to experience joy in a variety of ordinary, everyday community places?

7 Questions First Page

© David Pitonyak, Ph.D.