July 25th PDPPC Meeting Minutes
Most of the meeting was devoted to discussing what would make the program sustainable: The department has a definition and comments were made about this definition. The group adopted a voting structure, supported a change in the personal care regulations to allow for care in the community and supported changing the requirement that clients have to redo the entire ASMP if there is a change in allocation.
The definition from HCPF about sustainability and stability is:
CDASS will be considered stable when programmatic structure and benefit is supported by and provided within state and federal regulations and statute. Requirements must allow for consistent and equitable administration. Further CDASS will be considered stable when delivery method considered cost effective or neutral where appropriate. Dept asks members of PDPPC to consider these elements first and foremost when developing recommendations to enhance the programmatic benefit or fiscal structure of CDASS benefit.
Some of the key areas needed to make the program stable and sustainable include fixing the task worksheet and providing instruction to assure that people with different SEPs get the same services for the same issues.
PPL is revising training and has experienced a high call volume and are taking measures to address wait times.
John Barry opened the meeting and said that he and Chanda would co-facilitate the meeting:
Present in the room:
On the Phone:
Location of our meetings:
John wanted to say that there was a dual eigible meeting at the MS society and there was feedback about safety of PWD getting to and from this building and he wanted to ask if this was an issue or if there was issue within the building. He handed out the parking map of the building. If there is an issue, let Sharon O’Hara of the MS Society or John know of the specific problem. Josh said there was a family restroom that is larger behind the regular ones but you need to know—as the door does not lock.
No comments or concerns about access or the building.
Chanda reviewed the agreements for the meeting –outlined on agenda and in past meeting minutes.
Send agenda items for future meetings should be sent to co-chairs by the 2nd Wednesday of the month. This includes subcommittee co-chairs but anyone can give suggested topics. Send them by email to firstname.lastname@example.org or email@example.com
Mark said there should be exception if there is a pressing issue that comes up during the intervening two weeks. John said that agendas are always a draft until the group approves them.
June Minutes: They were distributed and send in hard copy. Corrections focused on name spellings and attendance list. Specifically Sara Horning (not Sarah) and Corrine Lindsay (not Lindsey) and Heather Jones was on the phone at last meeting
Mark asked if we could put names of organization and Bonnie explained that we did not do this because it could violate clients’ privacy. Linda S. said that the attendance sheet also identified who was a client. Linda will send updated version for posting to the website but will keep her current version so we can assure control by clients. Mark said that minutes should identify a last initial when two people with the same name were at a meeting. Mark said that if he was there claiming to represent people they had a right to know who he was –Jose said that was done from the minutes. This discussion will be continued during the discussion about voting.
No other corrections: minutes accepted with these corrections
Materials and Meeting Accommodations:
Some people came forward about how to make the materials and meetings more accessible to people: How is the web site working and how can we get better participation from people on the phone. Chanda asked if there were big issues that need to be addressed in terms of this meeting.
Sueanne said she had several things:
At last meeting no time to interject or comment. Everything ran through and people on the phone did not have a chance to comment before moving onto the next item. People should be able to comment before they move onto a new topic.
She has dexterity problems and has difficultly turning pages. If Matrix or other materials can be put in packet in order of subcommittee that would be easier for me.
She wanted to compliment everyone involved with the survey and compilation of data—the data presentation was very well done.
Chanda said that at the end of each topic we should always call out if anyone on the phone needs to add something and this should go on agenda so we do not forget about it. She also said that when one does a webinar there can be a computer where people can tap in and let the moderator know there is something that needs to be said so the moderator can make sure to get people in the queue. The later may be more complex if not everyone has computers.
Linda S and Sara said they liked the ideas.
John Barry suggested if we should alter between phone and room because once we comment it becomes a conversation so we are relegating people to the phone to the end.
Sueanne said at the end of the last meeting she did not know if the meeting was actually over because there was all of this noise. But there was no time to make any comment because of the all of the chatter so others on the phone assumed the meeting was over before it was actually over.
Chanda agreed that we need to adjourn formally before allowing people to talk. She asked Sueanne if alternating between the phone and room addressed her concern. They will try it for this meeting.
Corrine suggested that after each meeting someone can go over questions with people on the phone. Sara agreed. John said this should be a stakeholder. Josh will do that to make sure that people got everything and Sara will be backup.
Gabrielle gave update on process with training redesign and also wanted to proactively address other things
Redesign coming along very well; they are splitting training into two parts,
Program based: What is self direction, why are you here, what do you need to know, budget development, what are the regulations, etc
Employer based: As a managing employer how do you do that, how to hire, how to maintain employees, do time sheets, paperwork, etc.
Training will be same length of time, same day but have a cleaner break between the two components. This was done based on feedback from the community.
The goal is to get to train the trainer in September with peer trainers then launch the new training. For existing clients it does not matter, but if anyone is interested in contributing they want to hear it but it will make things better for new clients. PPL may be asking for quotes from existing clients what works in different areas such as how do you budget, how do you hire, etc., to personalize it for new people.
Sara asked if someone who had been on program who begins to struggle with any aspect can they get help from a trainer to get back on track. Gabrielle said there is retraining but there is not anything in place to address one part but that it was a good idea and she would speak to Phil about it. Sueanne agrees
Linda S asked how often they do training. Gabrielle said it depends, there are trainings around the state and it is based on demand. They do one to one and phone training and are developing a computer based training. She asked if she could go through training as someone who is not a client or AR. Gabrielle said she had been talking with Phil about that—maybe doing a launch for the community? She will get back to us on this.
Chanda said that the program support specialists (PSS) are available to help out and some peer trainers do this as volunteers but that it needs to be more formal and clear.. Robin said some of the informal needs to be formalized—they get calls regularly There needs to be client run information and support line—does not need to be paid but needs to be standardized and put in format.
Gabrielle said there were high call volumes lately that led to longer wait times and they were waiting for this.
Chanda asked Linda S. to take over co-chairing that committee and she agreed. The group accepted this decision. Linda would like a CDASS participant or family member to take over or do it with her. Debbie Miller said Linda was great. Jose said he would join as he is applying to be a client.
What does stability of the program mean
Chanda asked for input about what it meant to each of us.
Jose said if it means following the rules we are in compliance now
Sueanne asked if we were talking about the issues or what we were talking about? Bonnie said the question is what would make the program stable and sustainable---if something is not working so bad that we don’t want to expand or that is so big that it could cause the program to not be sustainable. The Department did a definition
Josh met with Sue and Suzanne this morning and asked for clarity on which items from our matrix were important to them in terms of stability.
Sara said the task sheet (fixing it) will cause a lot of stability and most of the items in the admin group are related to that and this will go a long way
HCPF came up with a paragraph at our request: The paragraph was read by Bonnie
CDASS will be considered stable when programmatic structure and benefit is supported by and provided within state and federal regs and statute. Requirements must allow for consistent and equitable administration. Further CDASS will be considered stable when delivery method considered cost effective or neutral where appropriate. Dept asks members of PDPPC to consider these elements first and foremost when developing recommendations to enhance the programmatic benefit or fiscal structure of CDASS benefit.
Corrine: Confused –talk about stable and programmatic structure –will we be privy to look at what they mean and will we be privy to the regulations and laws or just the survey? Do we have something in writing that has provided stability. Who defines sustainability –state, feds, etc.
Bonnie –response—part of the work plan is prior to subgroups working through each of these tasks HCPF will do the research to define on each task what fed and state regulations say and what is in writing for each. Dept has made commitment to have appropriate staff person at table so all elements are addressed during the work process.
Jennifer: Example of what creates stability is the allocation management protocol because it was not consistent or concise so we came together and fixed the problem. She said that in looking at issues the task worksheet is a problem, respite, and crisis situations are up in the air and they need to be addressed to make it more stable. Some things are good ideas like reinstitution of FAS but that will not make things stable.
Bonnie-they did have a small group of people interested in expansion meet Monday so one thing they did was to look at all tasks to figure out which have to be done before expansion.
Sara: Does CMS have specific items that need to be done and if so will HCPF share that? Does HCPF have a list they believe need to be done immediately to make it sustainable? What does Suzanne, Sarah, John and Bonnie think needs to be done.
Bonnie: CMS has broad, global, quality assurance measures but nothing specific about CDASS. There is not a list from HCPF as they have made a commitment to do this work in collaboration so they do not have a list. They did work with small group of list for expansion with small group of stakeholders and that list will go out as soon as the group accepts her notes which were sent out yesterday.
Linda A. I was part of Monday small group and they identified what was needed as far as what was needed but still looking for state to tell us what they think is important.
Mark: When you talk about cost effective or neutral that raises concerns because we often do things that result in unquantifiable savings or savings that dept number crunchers don’t acknowledge. How do you quantify savings? We need to make effort to identify these savings. He does not see client satisfaction rates with program, if clients not happy it will not be stable. How does he add item to matrix.
Bonnie: Cost neutrality data is part of subgroup work and will be done in collaboration and it is not easy to quantify. She agrees on client satisfaction suggestion and work will be in subgroups collaboratively.
Josh: Based on conversation with Sue and Suzanne is that the consistent and equitable thing is important, you can go to three different SEPS and get three allocations. CDASS should be based off home health—service delivery options should not affect how much you get. Josh said when he asked CMS if there was anything stopping CDASS expansion he was told no but HCPF Is also working on waiver modernization and the question is does CDASS get lumped in.
Bonnie: She does not think there is a difference between state and CMS. She thinks the state needs to know they can meet all quality assurance elements before they expand.
Robin: Admin group has been working on equitable piece for months and they never got a response. She said a care plan should look the same regardless of service delivery model. We are all saying the same thing and there has been no response to very specific recommendations and now HCPF is saying there is barrier to expansion. She wants specifics and timelines. She thinks there is very little we disagree on and we need to stop talking and move forward.
Bonnie: There was confusion of what was submitted formally versus informally and she will volunteer Phil to follow up and make sure HCPF knows what was submitted and assure responses.
Jose: At the meeting Monday some important issues were decided that they are not needed to be fixed for expansion, but they are still important.
Bonnie said that we need to look at what is working right now and what is not—from a programmatic slant—this does not always equate to stable and sustainable but usually. This does not mean that some groups won’t get into issues and say that there are multiple layers –that might happen. We have not done the work yet so we do not know.
Marguerite: I don’t know what regulations and statutes we are working under. When it comes to determine cost effectiveness who decides—she said part it that should look at what goes into client services versus some agency overhead. Funding can be cut by Congress tomorrow. We have to trust that systems will be there and if not what is our plan?
Mark: Cost effective is that it would cost less than what we would pay a nursing home for that same person.
Heather: SEP would like to see period of time with new protocol see period of time with no overspending or staying with allocation or within ASMP—it is constant burden to keep on top of clients.
Linda S-ditto to Mark and Marguerite comment about cost effectiveness not the same for all people. There seems to be something that the state has in mind to fix and even if Bonnie says there is not there must be something. Bonnie is not in their lap all day.
Bonnie: Equitable and consistent administration is key for stability. Program needs to be set up so no matter where you are it is administered the same. This can be enhanced through rule, policy or training but need to know it is administered the same.
Robin: Three main issues she is hearing: Any regulatory inconsistencies need to be streamlined, we need to develop methodology to create care plan across waivers/delivery systems and need data collection to assure program is truly cost effective on individual and aggregate level.
Bonnie said that rules are OK but we need to be clear that any recommendation must be grounded in rule.
Sara: FAS (fund for additional services) may not be needed before expansion but it is a big deal for sustainability because it was a tool to keep costs down. There was a lot of money saved during that time and when it went away people stopped saving.
Maria: Agrees with FAS discussion
Status Update on Subgroups:
A meeting was held with subgroup chairs and each task was assigned to a subgroup. A work plan was sent out to the group on the 19th. There is a general tab and each group has a tab. The meetings need to be scheduled quickly and the department needs to know so they can have the right information and staff available. The work plan will be
Administration and Management: No update-trying to get meeting scheduled and the meeting is set up for August 15 and she hopes to have a list of what they need to do next and this discussion helped to clarify.
Transparency and Law will be meeting afterwards to give people a chance to see what they are doing.
Mark asked how to get something added. Answer: This is living document.
Mark said the issue was benefit implications and education of clients. He used his own case about his wife being exempt from SSI income counting for his home care due to a social security rule that many people do not know about this.
Bonnie asked if this was only a CDASS issue or does this affect everyone on Medicaid? Mark said it affects everyone but has unique CDASS aspects
Voting Proposal Discussion:
Continued from last meeting and handouts were provided: Chanda asked Linda S. to review proposal and lead discussion. She explained that this proposal came to the group last month and comments were made and document was changed per the comments: Changes included no fiscal intermediary vote and members must attend at least one meeting in six months even if excused to not lose the vote. Mark said we needed to outline who does and does not have a vote—how do we identify them to the public. Linda-need to have movement on ongoing basis which is why we track in the way we do ---so how do we say this on the web.
Suggestion: Could attendance list say voting or not? Yes. Everyone agreed with this process.
John Barry suggested we have non voting participants and voting members. Josh moved and Linda A seconds adopting this process. Full agreement: John said that someone should be in charge of keeping track of who is and is not eligible to vote. Linda S. was unanimously nominated and Chanda will be backup. If someone does not want to vote on a specific item they can abstain. Linda explained that the reason people had to come three times before a vote was to make sure people making decisions are invested.
Josh: He realized that there is a problem with the rules on personal care in CDASS 8.510.3.2 requires personal care to be in the home. This needs to be changed as this is not appropriate. The federal and state regulations for Buy-In require these services in the community. The practice is that we have all been getting care in the community and we all have been trained that we can use services anywhere we need them. Josh said that he brought this to Sarah and Suzanne and since all changes have to come through this group he wanted to ask for approval from this group to pursue changing the rules to allow personal care in the community. Linda S asked if there was a need to change the law—it was determined during the meeting that there is NOTHING in the law requiring that personal care be in the home. THERE WAS APPROVAL FROM THE GROUP and everyone was clear that the practice has always been to allow CDASS services to be provided anywhere we need them to be and that the rules need to be changed quickly to reflect this for the reasons mentioned and because CDASS was designed to allow people to have a life.
Jose: Sarah said there was a temp guy working on this and Jose wanted to know who he was and why he was working on this.
Bonnie said his name is Jason and she does not know anything more.
Phil said he is an attorney and a temp and is working on personal care rules. Josh said he is looking at how the definition varies and does not make sense across all programs and is evaluating why so many definitions.
Josh said that if the department does not bring the rule in September then we as a community need to bring it in October. It needs to be dealt with to comply with buy in and to make CDASS be what it should be.
Debbie: Why do we have to do new attendant support management plan or ASMP at recertification? If this is the case she is not going to be an AR for anyone because that was meant to prove we knew what we were doing, this is ridiculous.
Rhyann said that she noticed that clients got increases and never updated the plan so they are trying to get all ASMPs updated the regulations say you have to review ASMP annually and update as needed so they are trying to get everything up to date. She said in the future maybe we can get a one page form to just update them.
Debbie said why do we have to fill out the whole form such as the sections such as describing your disability, how we hire, etc. Rhyann agreed and said that Marie had forced people to do the whole plan but maybe the department can revise that decision.
Chanda said this needs to be brought to a committee. Debbie said that her case manger said she could find old ASMP and make a copy of it and send it in. She wondered why if they don’t track it why should we have to track it and several agreed that this is busy work. Jose said that there is already a lack of AR’s and this will make it worse. Linda S suggested lets ask HCPF if we can only do the budget page if there is a change. Debbie said her son’s allotment has not changed except for budget cuts and another person has not changed at all so why fill it out. Phil will review and get back to the group about making it so we don’t have to redo the whole form. Linda S. asked for a timeline for an answer and letter to SEP. Phil asked if this was LTCO only or all SEPs. Rhyann said they wanted to do it in the simplest way possible and they were only responding to verbal direction from Marie. Phil said he would talk to SEPS and figure out what needed to happen and get back to all of us.
Sueanne asked about the definition of stable health for people with degenerative diseases. Chanda said a subgroup was working on this.
Don R asked if there were thoughts about saving money when the program was started –how do they save now that FAS is gone? Have there been any studies? Were they saving money or not? Chanda said that this question has come up a lot. Mark Simon said if there was a carrot there has to be a stick. This is assigned to law committee. Don was referred to speak with law committee.
The group then waited for Sarah Roberts to call in as they had structured the meeting around Sarah’s call expected at 2:45. She was not able to call in.
Bonnie offered to take questions back to Sarah.
Linda S. said that it was important to people in the group to have Sarah answer these questions as the official decision maker –maybe people need to do email questions to Bonnie to compile to Sarah. Linda emphasized that this was nothing against Bonnie or Phil but that it is was important to the community to hear from Sarah as the boss.
Others agreed. It was stated that people hope that Sarah will be able to come to most meetings.
John Barry asked what happens when we put something in the parking lot. The response was that there will be a parking lot tab on the work plan. Bonnie will manage that.
The next meeting will be August 22, 2012 from 1:00-3:00 at the MS Society.
Minutes submitted by Julie Reiskin from recordings made by Josh Winkler and Jose Torres.