Brian Chicoine, M.D.


From: Chicoine, Brian
Sent: Tuesday, August 23, 2016 4:06 PM
To: This email address is being protected from spambots. You need JavaScript enabled to view it.
Subject: Comments on Draft: Community-Based Health Care and Other Services for Personal Enrolled in Home and Community-Based Services Waiver


I am writing to share my concern regarding the draft “Community-Based Health Care and Other Services for Personal Enrolled in Home and Community-Based Services Waiver”.  For nearly 30 years I have been part of the struggle to improve the quality of health care for people with intellectual disabilities. My experience tells us that while the intent of the draft is well-meaning, in my opinion it is based on inadequate information and will have negative outcomes.

My experience dates back to the mid 1980’s when I was the medical director of 2 fifteen person residential facilities in Freeport, IL (Freeport and Ridge Terrace).  I saw those patients both in the office and in their homes.  I am now, and have been for nearly 25 years, the medical director of the Advocate Adult Down Syndrome Center in Park Ridge, IL.  I am also the medical director of Park Ridge Care Center, a 45 person nursing home that serves almost exclusively people with intellectual disabilities who have developed other conditions (e.g. Alzheimer disease) and the medical director of Misericordia in Chicago for which I see patients in our office and at Misericordia. 


During my career, I have served over 7000 adolescents and adults with intellectual disabilities (I estimate that I have served these individuals in over 70,000 patient encounters).  I have published books, articles, and chapters and have presented hundreds of times at local, regional, national and international conferences on the subject of health care for people with intellectual disabilities. 


The reasons I believe this effort to have all of these individuals get care in the community is inappropriate are too numerous to mention them all but I will highlight a few.


Access to care is a huge problem for people with intellectual disabilities.  There are many reasons:

·        ---Lack of education for health care providers

·        ---Inadequate reimbursement by Medicare and Medicaid for medical services and typically these patients take longer to see that even further reduces the actual reimbursement from a time standpoint

·        ---Difficulty getting a person with an intellectual disability to the medical facility which may be their anxiety, the cost of staff time to bring them to the appointment, the lack of availability of staff that is knowledgeable about the individual to come with them to the appointment, the refusal for providers to have these individuals in their offices because “they are disruptive to other patients” and other reasons.


With these challenges obstructing health care, we have found that providing health care at the residence or work place for some of our patients has significantly improved the care for our patients who choose this option.


Let me give you an example of how serving patients on site has improved care.  Many of the individuals with intellectual disabilities have complicated medical and psychological issues.  The medical and the psychological issues are intertwined.  The opportunity to see patients at Misericordia has allowed me to see individuals with intellectual disabilities accompanied by family, staff from the residence and/or day program/work site, psychosocial personnel, nursing staff and other providers.  (It is exceedingly rare to have such a team all come to the office for an appointment-no matter if the patient lives in the family home or any residential facility). Since the great majority of people with intellectual disabilities need assistance with providing the medical history, particularly when it comes to psychosocial issues, the available history from this group (including the patient) has vastly improved our understanding of the contributing factors in behavior change and the available treatments (in addition to medications) and has improved outcomes.  In addition, sometimes it is of critical benefit to actually go to the person’s residence or work setting to see first-hand the stressors that may contribute to the change in behavior.


While I agree, in the perfect world (or even in a world that is significantly better than the one we live in), having all individuals with intellectual disabilities be served at health care facilities in the community that are welcoming, knowledgeable, accommodating, and able to manage the health issues of people with intellectual disabilities is a laudable goal.  However, we are nowhere close to having those services available to people with intellectual disabilities.  Forcing the issue will leave many people with inadequate health care that they have fought to attain for many years.


Let’s build a support system that could make this idea a reality.  Improve education of providers, improve reimbursement for health care providers, improve funding for staff to increase numbers and improve pay so that knowledgeable staff are available to bring the individuals to appointments and to provide the appropriate patient history, and foster a world of inclusion that welcomes these individuals in health care settings.


These supports are not in place.  It is not realistic to think that if the decision is made that all these individuals will need to be seen in the community that suddenly they will be in place.  Health care for these individuals will take a huge step backwards.


In a time when many people now have access to health care in their residence (during a stroll through some very nice neighborhoods in Chicago I often see apartment and condo buildings in which a health care facility is in or attached to the building) or in their work place, why should people with intellectual disabilities be denied this choice?  If people with intellectual disabilities choose to obtain care in the community that is fine.  They should also be trusted to make the choice if they choose to make the decision to receive care in their home or work place.


Please feel welcome to contact me if you would like to discuss this further.



Brian Chicoine, MD
Adult Down Syndrome Center 

Family Medicine Residency

Lutheran General Hospital 

1610 Luther Lane  Park Ridge, IL  60068

phone: 847-318-2303

fax: 847-318-2377

facebook:  Adult Down Syndrome Center