The federal agency in Washington D.C., the Center for Medicare and Medicaid Services (CMS), issued new rules that define the types of homes and employment opportunities that will be eligible to continue to receive Medicaid “waiver” funding when the new rules take effect in March 2019.
These new rules are important for Misericordia families to understand because they apply to Misericordia’s CILAs and its day programming, and the rules could apply to Misericordia’s homes on its campus if those homes receive “waiver” funding under the new continuum of care legislation that is now awaiting Governor Rauner’s signature. The CMS rules are very long and complicated, so it will take more than one article to cover them.
Medicaid funding for individuals with developmental disabilities is provided for under the Social Security Act. The Act itself authorizes funding for individuals living in intermediate care facilities for the developmentally disabled (ICF/DDs). In 1981, the Social Security Act was amended to permit Medicaid funding for small homes in the community (commonly referred to as CILAs). The amendment does not define what is considered a community setting. Instead, the Secretary of Health and Human Services (which includes CMS), has the authority to define what is considered a community setting. In 2014, CMS issued its final rules governing such settings. The rules give the states five years, until 2019, to make sure that homes and day programming now receiving waiver funding comply with the new rules. Illinois has started that process.
Under the CMS rules, a community-based setting must have all of the following qualities:
1. It must be “integrated in and support full access of individuals [with disabilities] to the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, to the same degree [as non-disabled individuals];”
2. “The setting is selected by the individual from among setting options including non-disability specific settings and an option for a private unit in a residential setting;”
3. The setting must “ensure an individual's rights of privacy, dignity and respect, and freedom from coercion and restraint;”
4. The setting must “facilitate individual choice regarding services and supports, and who provides them;”
5. Units must have entrance doors that are lockable by the individual, with only appropriate staff having keys to the doors;
6. Individuals sharing units must have a choice of roommates;
7. Individuals must have the freedom to furnish and decorate their sleeping or living units;
8. Individuals must have the freedom and support to control their own schedules and activities and have access to food at any time;
9. Individuals must be able to have visitors of their choosing at any time; and
10. The setting must be physically accessible to the individual.
The key with respect to the first requirement, integration in the community, is that the home must “support” access to the community and provide “opportunities” for such access. It does not require that all individuals accept such support or opportunities. Individuals remain free to choose which, if any, community opportunities to take advantage of. Item 2, providing other options, is an obligation of the State, not the provider such as Misericordia. Before choosing Misericordia, each individual must be presented with all the other residential and vocational options available to him or her. The requirements in Items 5 through 9 above, can be modified for the individual if supported “by a specific assessed need and justified in the person-centered service plan.” For example, if there is a medical reason why an individual should not have access to food at any time, the individuals access can be limited as long as it is documented in his or her plan. I will discuss the requirement of a person-centered plan in a separate article.
The CMS rule identifies certain settings that are not community based settings including (a) nursing facilities, (b) an institution for mental diseases, (c) an ICF/DD, or (d) a hospital. The rule further provides that any setting “that has the effect of isolating individuals . . . from the broader community . . . will be presumed to be a setting that has the qualities of an institution unless the Secretary determines through heightened scrutiny, based on information presented by the State or other parties, that the setting does not have the qualities of an institution and that the setting does have the qualities of home and community based settings.”
As the above quoted language indicates, in deciding what settings are considered community settings, CMS will rely on information provided by the State and “others.” Thus, the process will be open to the public. We know that the community advocates will try to argue that Misericordia’s homes have the “qualities of an institution.” This is the argument they have long made. We, of course, know this is not true. It is going to be up to us, the Misericordia families, to provide information to the Illinois Department of Human Services and to CMS to show that the homes we have chosen for our loved ones are not institutional and that they in fact meet all of the requirements that I have listed above. We will need to explain that our family member is living in the home of his or her choice, that his or her privacy and dignity is respected, and that he or she has the opportunities and freedoms he or she desires, consistent with his or her medical needs and cognitive abilities.
One can certainly question the wisdom of the CMS rules. However, until they are changed, these are the rules we must work with.
I am happy to discuss any questions or comments you may have. You can contact me at This email address is being protected from spambots. You need JavaScript enabled to view it.. Also, please let me know if you want a complete copy of the CMS rules.
Scott