DRAFT PDPPC Meeting Minutes October 25, 2012
There were issues with the phone so this was an in person only meeting. We discussed the allocation process and agreed with the outline presented by Candie. She will finalize based on comments and the vote to recommend that HCPF implement will be next month. Written protocol will be sent out before the meeting. This process is being developed but the group agrees that the long term goal is a process that will be consistent between service delivery methods. That process will include the ULTC 100.2 and will be done via the LTCAC. We are formally asking that we be notified of that so that we can participate. We began the discussion on protective oversight and specific information from other states and CMS will be sought for our next meeting. Discussion included the difference between protective oversight and respite, and whether or not protective oversight must always be tied to a task.
Italics indicate decisions made by group
Highlighted sections indicate an action to be taken by someone
Present in the room:
Due to technical difficulties there was not phone access for this meeting. The following people who were present on the phone shall be excused and have no negative affect on their voting rights for this meeting:
Todd Lobato Wright
Meeting called to order at 1:00 but due to phone issues the beginning was delayed until approximately 1:15 while we tried to remedy the issue and decided that it was not possible and agreed that those present on the phone would be excused. It was also noted that Sharon O’Hara and the MS society have been wonderful and helpful. For example, they had IT people in the room within minutes of our discovery of phone problems.
Jose moved and Linda Skaflen seconds that the August minutes are accepted-passed unanimously. Previous correction of a name spelling was made before the draft minutes were sent.
Linda Andre moved and Jose seconded that the September minutes are accepted-passed unanimously. No corrections.
Linda Skaflen reviewed the attendance record and policy and pointed to the handout showing who has a vote for each meeting.
Long Term Care Advisory Committee (LTCAC) updates: Julie Farrar was going to give this update and because she was on the phone was unable to update us to the work of the consumer direction subcommittee. Candie reported that at the last meeting there was not a lot accomplished as they went over structure and voting. Candie said there was discussion to make sure that they did not duplicate the work of this committee and wanted to get a regular update from us. She said that Julie F. had a question to ask this group but did not know what it was so it will be scheduled for the next meeting. We agreed that Linda S will be tasked with providing that LTCAC consumer direction group with an update about our activities. This item will be on the November agenda in case Julie F has more to say.
John announced that the next LTCAC meeting will be on November 8th, there was some discussion about moving the meeting because the location at Regis is not available on the 8th but after a lot of work they found an alternative location at 360Acoma. John was praised for doing this rather than allowing the meeting to occur on a date that would conflict with the Community First Choice Council. All subcommittees meet from 10-noon and the full committee meets from 1:30-4:30 p.m.
PDPCC discussion of subcommittee roles and co-chairs:
Julie R. proposed that subcommittees did great work to get to specific point but are not needed right now so should be closed, however the co-chairs should constitute the leadership team that HCPF should use to do the work between meetings. Moreover, ad hoc subcommittees should be constituted as needed to do work that is needed in between meetings, which are best done in smaller setting.
Make sure we do not slow way down –balance between order and making sure we have enough people to get things done and keeping things moving because the list of things to do is long.
Have coordinated conversations with HCPF.
Make sure we are not spinning our wheels.
The "big" meetings are working meetings but we need to get things done and need to do more than one thing every one or two months.
Linda S suggested that the leadership team look at all non-expansion work and create a list. This list will be used to define what requires committee work, what can be delegated to an ad hoc committee versus what needs to be done in the large group, etc. Bonnie said that the list is already done and we need to organize ourselves. HCPF has a work plan and will bring it to the leadership group.
Jose moves and Linda Skaflen seconds ending committees, using co-chairs as leadership team and allowing for ad hoc committees to be started (always time limited and ending with issue resolution). Anyone can read the minutes and ask to be part of meetings on any issue of interest. Passed unanimously.
Candie handed out a document which explained the recommendations from the last meeting and the work of the leadership team. Candie explained the handout. (Handout attached or linked).
It always begins with the ULTC 100.2 and service plan.
Discussion and decisions:
We will eliminate the task sheet and create something completely new to create a guideline for the rare situations where a discussion is not adequate.
Anything we create is a guideline, any time frame is a guideline and there is a range that would be needed for any tasks.
No more micromanaging by the minute, for example one can say that they need 2 hours to get out in the morning and not have to identify how many minutes for bathing, transferring, dressing, etc. If the amount of time is not consistent with level of disability and ULTC 100.2 a guidance document will be available.
Modify ASMP for more room to document and explain routine and care needs
What we create will be tested before rolling out for the large population.
Question from Robin: The admin committee made a recommendation that we need to have a process that is consistent across service delivery methods. She wants to know if this is an interim step as systemic solution is addressed by other committees. She requested that we ask HCPF for a time frame. Everyone agreed that a systemic way to address allocation related issues so that clients get the same amount approved regardless of service delivery method was important. Julie R. reiterated that even clients using agency models should get an assessment that outlines ALL needs and even if the agency was not going to do all shifts for assessed needs for paid care that it should still be documented in the assessment and care plan. The care plan can say why all services are not being provided and this should be true in all models. This is the only way to assure consistency and equity and to appropriately document the scope of needs, even if we cannot meet all needs for all people through the Medicaid program.
Jose asked for clarification about time lines—when we talk about time lines in THIS context it is about how long a task might take.
Linda A wanted to confirm that this is an assessment not a service plan, and that the service plan was the ASMP. There is a service plan that is used by SEP agencies that is separate from the ASMP but the ASMP is for all intensive purposes the service plan for use of CDASS services.
There was discussion that the 100.2 is going to be revised and that will be done by the LTCAC. Bonnie said she would get a commitment to figure out where the ULTC piece fits in with overall LTC reform process. PDPPC is not going to be the group managing the ULTC revision but we need to be part of the process.
Julie moved and Jose seconded that PDPPC make formal written recommendation that LTCAC or anyone in charge of working on ULTC or any sort of LTSS related assessment must notify PDPPC in writing of any work or any meeting relating to LTSS assessment. This includes advance notification of any decisions and opportunities for input. Passed unanimously. (Linda S handed out worksheet we can use for making formal recommendations to HCPF)
BACK TO DISCUSSION OF ALLOCATION PROCESS:
6) There is a need for a tool to help clients and care managers know what is available under CDASS, and what is skilled or not skilled. This tool must be a guideline and how well we train our SEP agencies will depend on how well that works.
7) As this process unfolds it is clear that training will be essential, communication is a key component in this process. Care managers must be trained about the difference between asking more questions to elicit important information and conducting an interrogation.
8) The allocation must be consistent with the service plan which must be consistent with the ULTC or successor tools.
9) Training: There should be different mediums (e.g. videos, written, online, in person) and all will be available on Internet. Clients and the public will be able to see everything that case managers are trained on so there will be no miscommunication and no variation.
10) Communication and Information:
There was a comment that we must assure information requested is valid and reflective of community needs rather than institutionalized perceptions that permeate other training models, such as the certified nurse aide programs.
Marguerite said that clients should have a list ahead of time outlining questions that they have to answer so they can decide if they need an advocate or ally with them or if they should be collecting documentation. Arthur said that many clients have diminished capacity and require an advocate.
Louise said she prefers consistency and that we should have a process that is the same for each client and that clients should not need an advocate. There are not enough advocates for all clients. There was discussion on this and several people chimed in –while there was agreement that it should not be needed and that there are not enough advocates to go around, many felt that people would still need advocates even if everything worked well due to diminished capacity issues specific to individual disabilities. However, people also acknowledged that the system is not perfect and while we continue to work towards improvement some people will need advocates in the process even when they have full capacity.
Linda A said that the questions on the ULTC are similar to questions asked in a doctor's office; she said that clients rarely get the ULTC form directly. She advises people to ask for it and said clients do not realize that they can ask for any form filled out about them. She said that it helps clients understand not only what will be asked by why so clients do not feel attacked. Suanne said if clients know what will be asked it will help client understand how allocation is figured and why decisions are made.
Jose asked if giving questions ahead of time would help with transparency or would it cause others to think clients were cheating the system. Response was that it would help transparency and clients needed to know so they could give helpful information.
Arthur said it was important to remember that not all clients have same capacity and that case managers do not have same dispositions. Therefore, different results can emerge from what looks like similar context. We need to lean towards the best result for each client. Some will need advocates. Consistency is important but not sufficient as a sole determinant.
Linda S said that Arc helps parents by giving them an actual planning guide before IEP meetings so the parent knows all things they need to think about and wonders if we need something similar.
Bonnie said that we cannot have prescriptive questions but need to train case managers to use good judgment. There is no way to think ahead for all situations.
Julie R. said that the training used to encompass how to think about all of ones needs and that probably needs to come back as training is imperative to the success of the process. She described a self assessment guide CCDC developed for LTC eligibility and wondered if something similar was needed for CDASS for allocation determination.
Candie reviewed how process ensures accuracy, and how it will be able to hold up to an audit. She reiterated that it all comes back to ULTC and service plan.
April said that person centered planning, education and training is the key to success in other states.
Chanda asked how we draft our recommendation to submit to HCPF. There is a form we can put recommendations on that was passed out by Linda S (the example on the form is about ‘natural’ or unpaid support and used as example. We agreed that if we vote on moving this forward it is with the caveat that this includes testing, that we have a say in the training content and that it must include robust training.
Mark said that all of the tools in the world are great but only if the client is prepared. Clients need to know what the case manager needs so the client can give accurate information and this takes quality client training. Candie will clean up the document she handed out and send out a specific document on which we can vote taking into account feedback from this meeting. We will vote at next meeting to assure those on the phone have time to digest what we did today, and because some people do not have email. Participants who will be eligible to vote at the next meeting must be sure to read material sent out ahead of time to be ready to vote on this issue.
Candie handed out and reviewed the briefing document (attached or linked). She reviewed the section from the HCBS primer related to definitions of personal care accepted by CMS regarding ADL and IADL supports. We discussed the following:
Difference between respite and protective oversight
Does protective oversight always have to be part of a task or can it be “watching” a client?
Protective oversight is defined as assuring a client is not doing something to cause harm to others-we recommend changing rules to add self or others. It is also defined as used to prevent wandering.
Some also consider it protective oversight when the client needs cueing or supervision to get a task completed, for example someone with a seizure disorder who needs someone there while they are bathing in case the person has a seizure. It might also be helping someone remember to do things like turn off the stove. The HCBS primer seems to say that CMS does not allow protective oversight simply because someone cannot be alone unless it fits the above definition.
Many think of respite as a large block of time for caregiver to get away either for vacation or for other emergency such as death in family. This is for a week or weekend, not a daily thing. However, families of clients who have 24/7 needs require someone else is “watching” loved one daily or regularly for things other than a need to go out of town.
If you can ONLY do protective oversight when there is a task happening that kind of kills the point of PO as you can get support for tasks even if what you are doing is cueing or supervising.
What about ventilator clients who need someone in case something happens, such as vent alarms?
If there is documented 24/7 need and some of that time is for tasks, and some is not but client cannot be left alone, can family choose where to use the funds if they are going to take care of a part of the care but need assistance to keep the client in the home? In other words if family will do the bathing, dressing, etc., but needs someone to stay with client while family works if client is getting needs met can family hire someone to be there to do whatever even if it does not revolve around tasks, as long as tasks are done?
Many people need 24/7 supports and there is a bunch of time when unpaid support is all that is available—what do you do with the time when the unpaid support cannot be available. Isn’t that when protective oversight should be used?
If we authorize protective oversight for all people who need 24/7 for all times when unpaid support is not available would not that cause a cost explosion? Can this be addressed with cost containment? For example, if we have a client on a vent could we not authorize up to just below what it would cost to have that person in a hospital?
Cost containment is not calculated for each individual. Currently there are two levels, over $167 a day requires additional supervisor signature and over $250 a day requires HCPF approval. However there is a group working on revising this process as well.
Can supervision be provided with NO hands on care? Allan clarified that the PCP rules allow unskilled care to be provided to address wandering and there are no apparent limits on this. He thinks that between this and the ability to use protective oversight to address “behaviors” means that there is room in the rules to address this using reasonable guidelines and respecting the flexibility that is the inherent component of CDASS
Debbie Miller discussed her need for respite from the perspective of a family member, she explained that there was no break and that her son required assistance on a 24 hour basis and that in addition to the larger tasks like bathing, dressing, feeding, that there were a million small things that needed to be done constantly. This includes picking up dropped cups and mopping up water up to 20 times a day, listening to him overnight using a monitor in case of a need meaning interrupted sleep, doing positioning and addressing constant issues like toe cramps and other aches and pains that go on all day and night. She said these kinds of services are needed 24/7 and that she has hired aides to do the personal care (bathing, bowel programs, etc.) but she has to do the rest. She said that she did not even have a way to get time off recently when her daughter had a baby or when she sprained her ankle.
Linda A said we need to deal not only with respite but with sick and vacation time (paid) for our workers.
Linda S and Alan both mentioned that the rule says that we can authorize protective oversight to mitigate disability related issues such as harm to people and property. We need to add self to this in the rules.
The definition is very broad
Could we look at this benefit in terms of individual cost containment?
We need to be thoughtful about what this looks like and how we say it. We need to make sure that what we define is able to be applied consistently.
Linda Andre said that the word imminent is important. We should use this for protection to be saved from imminent danger. A vent failing is one example and wandering is another but falling out of one’s chair or bed might not be a real danger, and more of an inconvenience that could be addressed with a life line.
Louise disagreed and told of a friend who recently died from a fall after being denied HCBS
Mark expressed concern with the language; he said that the term “protective oversight” felt as if by admitting someone requires this could be giving ammunition to nursing facilities to lock up the person.
Linda S said that what we are really talking about is assisting individuals to avoid behaviors that could cause harm to self or others
Are there some disabilities where we know people need 24 hour care (vent users, people with dementia, severe brain injury, etc)? Debbie said that for people with disabilities that involve behaviors are likely to be abused in a nursing facility because of their behaviors. Then they are not cared for properly and are in and out of hospitals. Debbie said before she had CDASS and took over caring for Brian and when she used the medical model that Brian was in and out of hospitals and since she took over 17 years ago he has had almost no hospitalization. She said these costs should be considered.
Allan said that we need to look at what we can do now and what we should work on to be allowed at a later time (perhaps after negotiating with CMS or adjusting for it in the budget if needed).
Gabrielle will do survey of PPL colleagues to see what is done in other PPL states.
Jose asked if we could look at the word supervision as it is condescending. Answer is that this is the word CMS uses so changing it would be confusing.
PROPOSAL: Continue discussion next month. In meantime Candie will get guidance from CMS about what we can and cannot pay for, and will see what other states are doing. There will be a smaller subcommittee to frame the issues. If someone is interested in participation they should call Candie at 303-866-2755 or email her at email@example.com by close of business on Monday the 29th.
Julie Reiskin: Reminder that written notice is required before any change in allocation even when it is small due to CDASS period issues. This came up recently with some LTCO clients and LTCO agreed to send notices and Julie requests that others do the same. Julie said that this was part of the agreement from the litigation. Discussion about whether one could figure out the amount and response was NO that the formula per day allocation was too complex.
Debbie Miller: Can we be notified when the case manager changes?
Linda S. We need to receive updates related to CDASS. For example, there is a rule going to MSB clarifying that CDASS clients can use our services in the community and are not restricted to home. While this is great, we still need to know of all changes that affect CDASS.
There are still many unclear verbal directions from Marie that need to be cleaned up, Candie and Bonnie are working hard to clean this up but still have a lot of work ahead of them.
Candie: Do we have people on PDPPC representing mental health issues? Answer was yes.
Julie Reiskin reminded people not to forget to vote because the election outcome could affect Medicaid.
THE NEXT MEETING WILL BE ON WEDNESDAY NOVEMBER 28TH, 2012 FROM 1:00-4:00 P.M.
Revision 1: Jose Torres-Vega
Revision 2: Linda Skaflen