Ed's Newsletter - Reaction to CILA Rule Revision
McMANUS CONSULTING
DISABILITY SERVICES
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ED’s NEWSLETTER
No. 179 – April 5, 2021
Special Edition
PROVIDERS SOUND OFF ON CILA RULE REWRITE . . .
Rule 115, the CILA Rule, is going through a major rewrite. The Division of DD published its proposed revision in the Illinois Register Feb. 26--141 pages! Comments from provider agencies and the public are due April 12. (See Register for instructions on commenting.) The existing Rule 115 is here.
We reached out to our affiliates who are CILA providers and asked for their reactions (without identifying them). Following are some of their responses . . .
Sections 115.214/215: DISCHARGING INDIVIDUALS FROM CILAs . . .
This is the issue that has attracted the most attention. Providers have long urged reforming 115.215, which currently prohibits an agency from discharging an individual without the approval of the Division--even when the person has extreme behaviors and is attacking other members of the household.
Another rule, Rule 120, also involves discharges. Rule 120, which is currently under review by the Division, deals with services funded by Medicaid, and it states that terminations are subject to review by the Dept. of Healthcare & Family Services. It is believed that there is no other state where a provider-initiated discharge is a Medicaid appealable action.
Some comments on 115.214/215 (214 is a new section) . . .
LANGUAGE ‘MAKES NO SENSE’: “It is good to see that some of the bureaucracy around discharges is lessening, but some of the language here still makes no sense. If the ISC and agency are both in agreement that the medical and or behavioral needs of an individual cannot safely be met and that reasonable and appropriate action has been taken (115.214), why does there need to be even ONE MORE DAY for the provider to continue? Why a 30 day waiting period? And how does an agency magically provide assistance to secure appropriate alternative services and supports?
“What if, in requesting appropriate documentation from clients (such as forms related to power of attorney or guardianship), the client’s family refuses to share these forms and then only communicates via attorney? If clients won’t come to meetings with the provider in a timely manner and insist on having legal representation instead of using the ISC, what rights does a provider have to discharge the client?
“In general, do agencies have rights to be free from abusive families and guardians who interfere with normal operations? What protections do providers have from families who misrepresent themselves or their family member’s needs, and in other ways create excessive demands that interfere with the provider’s ability to oversee other clients?
“Why can’t we have 30-60 day trial periods with individuals to see if we can actually be effective?”
PROPOSAL WOULD WRITE ‘DEPLORABLE’ PROCESS INTO LAW: “The proposal would write the current deplorable resident discharge process into law. The current process is abusive to residents who are shuttled between CILAs and hospitals for behavior issues with ever-escalating conflicts between these two organizations trying to do their best in difficult circumstances with little help from DHS. Providers currently can get to Circuit Court on a ‘writ of certiorari’, and such attempts will be made as there is no provider appeal allowed in the regulations. A new discharge process should be drafted that protects all residents and which has clear judicial review.”
DOESN’T SEE A LOT OF CHANGE: “The proposed criterion in section 115.215 is a step by step process with hopes of keeping the individual in the community CILA program, which is what we all want. However, there are times when behaviors become so severe and ongoing that the individual needs to be in a CILA program that is better suited for them. After reading section 115.215, in my opinion, if everyone is in agreement, the individual may receive a CILA placement that better fits their behavior needs; however, if there is a disagreement between the parties then more steps are required, including a department representative to help the individual achieve the needed services. The ISC agent holds the final decision and when they disagree with the provider team, I really don’t see a lot of change from the current procedure to what’s being proposed.”
NO PROTECTIONS FOR OTHER RESIDENTS: “It seems there is a lot of protection for the individual – which is appropriate – however, there are no protections for the provider or for the other residents of the home. As you know, most providers are only pursuing discharge when a person’s behavior has become harmful to others. The proposed changes place a lot of responsibility on the ISC to find an alternate placement, which for these individuals is generally not likely. And what eally happens when the ISC does not agree with the discharge? (Given that it becomes the ISC’s problem to find alternative placement--which is impossible--we can understand why they might not agree!) Again, no real way for a provider to discharge.
“Also, in these situations, we are fielding a lot of very legitimate concerns from housemates and families as the violent behaviors are negatively impacting them, sometimes resulting in injuries. The result of the current practices and these changes is that providers will not consider anyone challenging – there is no incentive to even try.”
AND, AN AGENCY THAT LIKES THE PROPOSAL: “What I like the most in the proposal is the addition of the new Section 115.214. This section would be very helpful to agencies when an individual's condition declines medically or when behavior issues can no longer be managed in a CILA setting. I also like the amendments in Section 115.215 which explain how to go about discharging a client.”
INTERACTION WITH THE FEDERAL ‘SETTINGS’ RULE . . .
‘DISAPPOINTING’: “The proposal is very disappointing. They have merely dropped a parcel of language from the federal HCBS regulations into the quagmire that is Rule 115 with the evident hope that this addition will sink like a stone – out of sight and never to resurface. There is no attempt to conform the existing CILA program to the HCBS rules – nor to change the payment system so that HCBS activities can be realistically undertaken.
“The proposal violates the HCBS regulations in the following ways: (1) it makes no provision for existing residents to choose roommates – new admissions are just plunked in without existing residents’ input or subsequent ability to object; (2) since CILAs in Illinois are generally ‘provider owned or controlled’, the HCBS requirements for door locks, food and visitor access, and daily service selections will be exceptions in many cases, rather than the standard; (3) the proposal does not provide a payment mechanism to address the special community access provisions for provider-owned CILA services, and so no changes are realistic concerning individual service selections by residents.”
INTENTIONAL COMMUNITIES ARE A VALID CHOICE: “Our primary concern is that the revisions push the agenda of the settings rule. Many of the families that come to us specifically seek us out because of our intentional community and the supports available in a campus based environment. It is concerning that the Rule 115 revision could have the effect of significantly pushing up the March 2023 deadline for completion of the settings rule and eliminate further opportunity to modify that.
“Several individuals have come to us after years of living in settings that would be considered integrated, but they had no sense of community or support and they never had interaction with non-disabled neighbors, despite years of living or working in those settings. We understand the need for integration, but we think that intentional communities are also a valid choice. Many non-disabled individuals choose intentional communities, such as planned communities with age requirements, ethnic neighborhoods where there is familiarity and a sense of security, etc. We believe that freedom of choice should be available to the DD community as well and can be done in a way that fosters integration.”
Section 115.300: ENVIRONMENTAL MANAGEMENT OF HOMES . . .
‘LOWEST COMMON DENOMINATOR’: “We have concerns about a number of new items added under the Environment section – for example, snow removal and ‘turf’ maintenance, dating items placed in the freezer, etc. We understand that issues may arise with some providers in these areas, but they don’t belong in the rule. And they are very open to interpretation. So depending on the surveyor’s interpretation, homes could be held to a far higher standard than any other home in the community.
“Many changes in the rule seem to reflect the ‘lowest common denominator’ – meaning they are written around the worst providers.”
‘SILLY’: “The proposed section 115.300 includes requirements to clear sidewalks, ramps and driveways of snow and ice, to make certain lawns are mowed and weed-free and to develop written policy on determining when food in the home is fresh and safe for human consumption. Aren’t good providers already doing this? It just seems silly to have it in the rule.”
SOME OTHER COMMENTS . . .
‘WHY CAN’T CILA BE SERVICES TIED TO A PERSON, NOT A RESIDENCE?’ “A CILA is defined here as ‘a residence where a person resides and receives services and supports….’ This is a description we have never understood. Conceptually, why can’t CILA be a set of services and supports that are tied to a person and not a residence? The services and supports can and do vary widely, obviously. We understand that it’s complex in Illinois because SSA funds are involved with rate calculations and mixed in with Medicaid. But we believe the assumption here is faulty: namely that the provider controls these funds as well as SNAP funds for the client. In our opinion this is the largest misstep.
“True, CILA monies do include a small amount for fixed housing/board and related costs. But the upper right hand corner of the rate sheet really relates more to SSI/SSDI. From the beginning, we have always understood CILA to be better represented by the construct of staff, not stuff. This includes the people, the services and the expertise needed to actually help people create the lives they seek through interventions, interactions, plans and opportunities.”
‘SOME AREAS FEEL PUNITIVE’: “While we appreciate the efforts to modernize and bring clarity to areas of the rule and to include the CMS settings requirements, some areas appear to contradict the spirit of community living, feel punitive and/or are geared towards the lowest common denominator of service provision.
“Section 115.200 states that CILAs must include opportunities to seek employment and work in competitive, integrated settings and that individuals have the freedom and support to control their own schedules and activities; however, section 115.130c states that individuals between the ages of 18 and 59 are expected to be participating in out of home, work oriented day programs. How does being in a day program support choice and competitive employment?
“Section 115.440c outlines the levels of compliance as a result of on-site surveys. The percentages have changed significantly for levels 3-5 and now include a requirement to be re-surveyed. Additionally, levels 4 and 5 permanently terminate an agency’s advance payments for services. The change in percentages makes it easier to fall into a lower category and could make it difficult for a provider to financially return to compliance with the loss of advance payments. We also question if BALC has the staff available to complete the additional re-surveys within the required 90/60/30 days.”
UNPAID ABSENCES: “We are concerned about unpaid absences. Currently the Department can and will stop paying if someone is out more than 90 days, and yet the provider cannot discharge. An example: We served an individual who had to go to rehab for a very extended period of time – approximately a year. After 90 days, we were not paid and our attempt to discharge was denied. In fact, we were not even allowed to move his personal items to a more accessible bedroom in the same house! All the while not being paid.
DISTANCE BETWEEN CILAs: “We have concerns about the elimination of the requirement that homes be no closer than 800 feet. We believe that this was manageable and helped promote integration and avoid too much density.”
MORE INVOLVEMENT IN PERSONAL PLAN: “We believe that the proposed changes will benefit the IDD population. To meet some of the enhanced sections of the rule we will make adjustments to specific policies, procedures and individual/guardian informed consent. We will remain committed to ensuring those we serve continue to reside in the least restrictive environment by structuring a more robust Human Rights Committee.
“We would like to see more involvement from the community agencies in the development of the personal plan and individual outcomes. Input is not consistently sought from the ISSA caseworkers regarding what outcomes may benefit the individual in the CILA and CDS programs. Enhancing the collaboration will allow us to continue designing services tailored to the individual. Overall, we don’t foresee any challenges in meeting the specific standards outlined in the 115 rule revisions as long as appropriate/adequate funding is available to fully implement required mandates.”
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McManus Consulting was founded in 2011 by Ed McManus, who worked for DHS for 18 years as an attorney, state coordinator of the Home-Based program and regional manager. We provide training to agencies and parent groups on how the system works and phone consultation to agencies on a retainer basis. We also offer phone consultation to parents pro bono. Ed's Newsletter is published approximately once a month.