Dear Misericordia Families: Once again we need you to act quickly and submit a comment by Friday, August 26 to the Illinois Department of Developmental Disabilities. At stake is our right to choose the doctors, dentists and other healthcare providers that we want our family member living at Misericordia to use.
On Wednesday, the Department issued a Draft Information Bulletin "Community-Based Health Care and Other Services for Persons Enrolled in Home and Community Based Services Waiver." If this Draft Information Bulletin becomes final without change, it will be the position of the Department that our family members living in Misericordia's ten off-campus homes cannot use any health care or other services offered on Misericordia's campus, including Misericordia's Medical Director, our Dental Clinic, or our Vision Clinic. Instead, our family members will be required to receive all services in the "community." This policy may also apply to Misericordia's on-campus homes if, under the new continuum of care license, Misericordia receives Medicaid waiver funding for its on-campus homes.
The complete Information Bulletin can be found by clicking on this link:
This draft Information Bulletin is very misguided because it deprives us of our ability to choose the health care providers we want for our family member. Misericordia has always respected each family's right to choose to obtain health care in the community for their loved one. However, many families choose to use the medical, dental, and other services offered on Misericordia's campus because of the superior care Misericordia offers and the reduced stress and anxiety for our loved ones. This right to choose must be preserved.
If you agree, please submit a comment to the Department of Developmental Disabilities voicing your opposition to the Draft Information Bulletin. The comment must be submitted by Friday, August 26, 2016. To submit a comment you must do the following:
- Submit the comment by email to: This email address is being protected from spambots. You need JavaScript enabled to view it.
- In the Subject line put: "Comments on Draft: Community-Based Health Care and Other Services for Personal Enrolled in Home and Community-Based Services Waiver"
- In your comment include personal information about your family member living at Misericordia, i.e., his or her name, age, nature of disability, and length of time living at Misericordia.
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Make it clear that Misericordia has always respected your right to choose the doctors, dentists and other service providers for your family member.
- Identify those services that your family member receives at Misericordia and those that he or she receives in the community.
- Explain the importance to your family member that he or she is able to continue to receive health care services you choose at Misericordia.
- Describe how your family member would be harmed if he or she was forced to use services offered in the community rather than on Misericordia's campus.
Below is the comment that Liz and I are submitting to the Department on behalf of our daughter Sarah. Feel free to use this to help you draft your own comment, but be sure that you personalize your comment and make it your own.
We must continue to fight the misguided notion that the "community" is always good and the campus is always bad. More important, we must continue to fight for our right to make choices for our loved ones that we believe are in their best interests. We must insist that government respect and honor our choices. No one tells us what doctors we should use. Similarly, no one should tell our loved one which doctors he or she must use.
Thanks again for your help on this important issue.
Scott
To: This email address is being protected from spambots. You need JavaScript enabled to view it.
From: Liz and Scot Mendel
Subject: Comments on Draft: Community-Based Health Care and Other Services for Personal Enrolled in Home and Community-Based Services Waiver
We are the parents of a beautiful daughter, Sarah, who lives at Misericordia. As Sarah's parents and legal guardians, we strongly oppose the Draft Information Bulletin "Community-Based Health Care and Other Services for Personal Enrolled in Home and Community-Based Services Waiver." This Draft Information Bulletin would interfere with our right to choose Sarah's doctors, dentists and other health care providers. It would also be severely detrimental to Sarah because it would reduce the quality of health care services that she receives and it would reduce the frequency that she receives certain necessary health care services.
Sarah is 34 years old and Misericordia has been her home for 24 years. Sarah has cerebral palsy, a seizure disorder, and Crohn's Disease. She needs a variety of health care and other services. Misericordia has always respected and honored our right to choose the doctors, dentists and other service providers for Sarah. Our choice of health care providers is always based on what we believe will be best for Sarah. As a result, we have chosen to receive some services in the community and some other services from Misericordia on its campus. Those choices have changed over the years as Sarah's needs have changed.
For example, Sarah currently receives her vision care, gastroenterology care, and her hair cuts from doctors and service providers in the community. At the same time, Sarah uses Misericordia's general practitioner for her routine medical care and she uses Misericordia's Dental Clinic. She also sees her neurologist when he comes to Misericordia's campus.
Like many individuals with developmental disabilities, and even non-disabled individuals, Sarah gets extremely anxious when she goes to the doctor or dentist. It is important that the health care provider has experience with individuals with developmental disabilities and have the patience and compassion to appropriately deal with Sarah. We have chosen the doctors and dentists on Misericordia's campus because they are the best for Sarah. They provide her the best care and she is far less anxious when she receives care in an environment with which she is familiar, surrounded by staff with whom she is familiar. When Sarah is less anxious, she is more cooperative and the doctor or dentist can provide more thorough care. In addition, Sarah uses a wheelchair so it is very important that the examining room be large enough to accommodate her chair. It is also important that staff be available to assist in transferring Sarah from her wheelchair to the examining chair or table. We are both aging and Sarah weighs as much as we do. We simply cannot make these transfers without assistance. In addition, Sarah is very anxious if some she is unfamiliar with tries to assist in the transfer. For all of these reasons, it is critical to Sarah's well being that she continues to receive healthcare services on Misericordia's campus.
Sarah's dental care provides a good example. For many years, while Sarah lived at Misericordia, she received dental care in the community. Her dentist had a lot of experience with individuals with developmental disabilities. He was very skilled and very patient and compassionate. However, a couple of years ago, her dentist retired and sold his practice to a young dentist. The new dentist had no experience with individuals with developmental disabilities. Fortunately, it was right at this time that Misericordia opened its Dental Clinic. The dentists in the Clinic have a lot of experience with people like Sarah. The technicians in the Clinic know Sarah and she is familiar with them. Sarah was able to visit the Clinic in advance in order to get used to it before having to receive any treatment. The examining room is extremely large so that it can accommodate Sarah's wheelchair. Her staff comes with us to the appointment to assist in transferring Sarah to the examining chair. The Dental Clinic has special x ray equipment that makes it very easy to get pictures of Sarah's teeth. Before the Clinic opened, we would have to take Sarah to Illinois Masonic's Dental Clinic for x rays. Sarah had have IV sedation in order to get the pictures at the Illinois Masonic Dental Clinic. At Misericordia no IV sedation is needed because its special x ray equipment makes is easier for Sarah and because Sarah is much more comfortable there. In the past, we would put off going for x rays at Illinois Masonic's Dental Clinic because of the risks of IV sedation. We don't have to have those concerns with Misericordia's Dental Clinic.
We feel very strongly that we must continue to have the right to choose Sarah's health care providers. We strongly oppose the Department of Developmental Disabilities telling us that we cannot choose to have Sarah go to Misericordia's Dental Clinic or use the other health care providers on Misericordia's campus. As Sarah's parents and legal guardians we know best which health care providers provide the best care for Sarah. We will continue to choose providers in the community when such a choice is in Sarah's best interests. But we will also continue to choose providers on Misericordia's campus when that choice is best for Sarah. The Department has no right to take that choice away from us. We therefore request that the Department rescind the Draft Information Bulletin "Community-Based Health Care and Other Services for Personal Enrolled in Home and Community-Based Services Waiver."
Liz and Scott Mendel