Pilot Program Promising

Comprehensive, coordinated and cost-effective care – this is not impossible!

Children’s Comprehensive Care Clinic is a pilot program in Texas which is showing promise.  In Washington, we could expand on this by utilizing the campus communities at the Residential Habilitation Centers to become “Comprehensive Care Clinics” for our citizens with developmental disabilities.  The report, Medical Care Task Force Jan 2002,  outlines a process to establish comprehensive, coordinated and cost-effective care.

When looking at cost of care for residents in the supportive communities or dispersed communities, some of the major costs that are not included in the dispersed community costs are medical, psychological, and therapeutic costs.  Removing these costs from the cost analysis does not mean they are free – it means they are not available or accessible or not provided.  Of the many, many studies that have been done this issue of not including medical costs is a problem.  What is interesting though is that the studies that have been conducted in the UK are more accurate – different funding and different agendas.  The UK studies have consistently found that dispersed community services are more expensive than institutional services.

Another interesting issue is “quality of care” and “quality of life”.  The Arc and other DD Advocates do not look at issues that are outside the personal outcome measures, such as choice and community involvement.  They are missing a huge part of “quality of care” issues by their narrow focus and do not realize that “quality of care” influences “quality of life”.

Quality of care (health and safety outcomes) can be measured objectively where as “quality of life” is more subjective.  We meed to include measurements of quality of care into our assessments and cost analysis.  Below are some examples of areas needing evaluation.

a..  access to comprehensive health care services (primary, psychiatric and dental care as well as ancillary services, including care coordination)
b.  rates and status of abuse/neglect reports and investigations (including victimization in the community)
c.  mortality review
d.  access and utilization of behavioral services and
e.  similar direct measures.

When people who require complex care from a variety of professional services receive all their care in a “medical home” model, such as the ICF/ID, dispersing these people  will make access to healthcare, therapies, nursing, recreation and more unavailable. It is well documented that people with ID have higher rates of chronic medical and psychiatric illness than the general population.   It is also well documented that people with ID have an increased incidence of medical illnesses and have need for comprehensive, coordinated medical services. (Kaye McGivney, 2008)  For the best care it is critical to maintain the same providers over time and to avoid disruption of services. (Kaye McGivney, 2008) No longer will services be accessible or able to be shared.    This means that either the cost of care will greatly increase or that the person will not receive care.

Research also shows that those with DD, when admitted to the hospital, stay longer than those without a developmental disability.  People with DD are also less likely to be discharged to their pre-hospitalization living arrangement due to the fact that the needed supports were not accessible.  This fact highlights the importance of having specialized residential centers (ICF/IDs) to help alleviate the cost of care, crisis care and hospitalizations.  Having such centers increases stability is cost effective and provides stability to the citizens.  (Haier Saied, 2003)

Developmental Disabilities are not only experienced by the person but by the family.  We need to look at not only individual quality of life but the families’ experience and quality of life too. (Colvin, 2006) It is critical to the health and safety of our most vulnerable citizens and  a responsibility of our communities and government to realize that we need supportive communities such as the ICF/ID to best care for some of our citizens in the most cost effective, stable, reliable and safe method.

To do otherwise, is negligent.

Works Cited

Colvin, A. D. (2006). Variables Influencing Family Members’ Decisions Regarding Continued Placement of Family Members with Mental Disabilties in One State Operated Institution.

Haider Saeed, H. O.-J. (2003). Length of Stay for Psychiatric Inpatient Services: A Comparison of Admissions of People with and without Developmental Disabilities. The Journal of Behavioral Health Services & Research, 30(4), 406-417.

Kaye McGinty, R. W. (2008). Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families. Psychiatric Quarterly, 193-203.


Medical Conditions and Behavior Problems – Health Issues for Individuals with Developmental Disabilities

Medical Conditions and Behavioral Problems


Writing in 2005, Ann Poindexter noted, “After forty years of working with individuals with mental retardation/intellectual disability and behavioral/psychiatric problems, I continue to be impressed with the importance of medical issues in the presentation of behavioral symptoms” (p. v).  Although it may not be offering new information to say that physical distress caused by non-psychiatric medical problems can provoke changes in mood and behavior in people with ID, this is a concept that bears repeating.  Often the root of a psychiatric referral of a person with ID will turn out to be an undiagnosed medical condition.  People with ID may lack the verbal ability to communicate their discomfort or distress.  They may even lack the cognitive ability to identify the source of their pain.   Health problems that may cause or worsen behavior problems include ear infections, premenstrual pain, sleep disturbances, allergies, dental pain, seizures, constipation, and urinary tract infections.

Addressing the need to assess for medical factors in the context of a psychiatric assessment, Hurley et al. (2007) write in the DM-ID:

Medical problems are often the source of the chief complaint for the mental health interview for an individual with ID, in contrast with the typical  interview for intellectually normal individuals (who can understand that they have a medical condition that could be associated with a mental disorder, such as chronic pain leading to Depressive Disorder).  For persons with ID, the association of medical condition with mental disorder is not generally understood — not by family, not by direct support professionals, and not by clinicians. (p. 17).

A recent study (Charlot et al., 2011) finds that “individuals with ID admitted for inpatient psychiatric care exhibited high rates of medical problems, and these were associated with duration of inpatient stay.”

Improved assessment and treatment of medical conditions may prevent unnecessary psychiatric referrals and may improve the quality of life of many individuals with ID by relieving their prolonged distress caused by undiagnosed and untreated medical conditions.

Robert J. Fletcher, Founder & CEO, NADD


Charlot, L., Abend, S., Ravin, P.,, Mastis, K, Hunt, A, & Deustch, C. (2011). Non-psychiatric health problems among psychiatric inpatients with intellectual disabilitiese.  Journal of Intellectual Disability Research55(2), 119-209.

Hurley, A.D., Levitas, A., Lecavalier, L., & Pary, R.J. (2007). Assessment and diagnostic procedures.  In R. Fletcher, E. Loschen, C. Stavrakaki, & M. First (Eds.), Diagnostic manual – intellectual disability (DM-ID): A textbook of diagnosis of mental disorders in persons with intellectual disability.  Kingston, NY: The NADD Press.

Poindexter, A.R. (2005). Assessing medical issues associated with behavioral/psychiatric problems in persons with intellectual disability.  Kingston, NY: The NADD Press.


This is one reason why it is so critical to have medical and caregivers who are stable and understand the population which they serve.  People with ID present issues very differently than those of us who are “typical” (whatever that is) .


The Medical Home Model, as researched and described in the report Medical Care Task Force Jan 2002 , is an example of how we

can achieve safe, quality and cost effective care for our most vulnerable populations.  Please share this report with others.