This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
LAUREN DIMARTINO: Just so we can get a sense who is in the room. It is a small room. You know, where you're coming from so we know how in detail and perspective would be most valuable.
TRACY BUTLER: I'm Tracy. I'm the Director for People on the Go Maryland, a disability group for people with developmental disabilities. I'm also the Director of training.
JAMES ORMAN: Tracy is my boss. I'm the Program Coordinator for People on the Go Maryland. I'm James Orman, Executive of Neurodiversion Advocacy Group.
LAUREN DIMARTINO: I'm Lauren DiMartino, I'm an attorney. I do disability rights work. I have an opportunity to collaborate with these guys recently.
I’m so happy to be here.
I’m also excited to see you here.
NICK BURTON: My name is Nick Burton. They them pronouns and I am a consultant and I own my own consulting firm that works with provider agency states around home and community-based services, disability needs, personal centeredness.
I also have a non-profit organization that is a consortium to expand clinical knowledge and skill capacity to best support people with intellectual and developmental disabilities and co-occurring mental health conditions.
Prior to this, I was the Director of Developmental Disability Services and Programs at the State of Maryland so I have a keen insight into the person-centered planning process, both in Maryland and also just generally speaking from a Medicaid standpoint.
JAMES ORMAN: I think I'll go ahead and get us kicked off here with some -- first moderator questions. And the thing that I like about radical person-centeredness the person-centeredness aspect of it, Nick, can you define what radical person-centeredness, why it is so important to home and community-based services.
NICK BURTON: I think everyone is wondering why we call it radical. In this -- particularly if talking about person- centeredness, my husband works for the federal government. He was given a list of words he is not allowed to say at work. One of them is accessibility and another one is diversity.
One of them is person-centered. They're not allowed to use those words at work. All the more reason why we should be having this conversation about person-centeredness and all the more reason we call it radical because I think at this day and age it is radical to talk about it and, it also is something we have been talking about for 30 years in the disability community.
And through my work both at the state level and multiple states and also at my consulting work, we don't have a grasp what person-centeredness is. It is a word we use quite frequently. When we really start to break it down, everyone has a little bit different version what it means.
I really think there's a connection between the person centered and equity.
I think person centeredness is equity and equity is person-centeredness. What I mean by person-centeredness is what do you want and need to be your most successful. Equity says how do we break down the barriers for you to be able to achieve those things.
I think when we think about person-centeredness from that perspective, we really start to get at the heart of the principles of person-centeredness whether that's autonomy, whether that is the ability to make your own decisions, dignity of risk, right.
Choice, control and I think until we can really start to actually make sure that people with disabilities have those abilities to make those decisions for themselves, we're still going to be talking about this and there's still a lot more work to be done in this field around that concept.
JAMES ORMAN: Well said. You know I think what you said, right, about the ability for the person to be able to get their wants and needs met to have the accommodations necessary to get that. Would you consider that one of the key principles of person-centeredness are there any others and, you know, just a brief overview of person centered planning?
NICK BURTON: Yeah. So I think the key principles you know really are that idea of autonomy. That idea of choice, that idea of control.
That idea of really making sure somebody is afforded dignity of risk not just dignity of risk in name that we understand that people with disabilities, may make bad decisions.
Just like we all make bad decisions and that's ok. It's ok for people to make bad decisions, sometimes we grow from those and even if we don't, it is still ok to make a bad decision. People are going to do it.
When we talk about person-centered planning we think about the principles of person-centeredness. It is really making sure that we all don't get around the table and plan for the person and then turn to them and say, that work for you? That work?
That's ok.
Reality is about making sure that the person with the disability is saying I want this. I don't want this. This is how I want it. This is where I want it. I don't care if you disagree with me on that, this is what I want to do.
I think when we talk about that dignity of risk aspect, it doesn't mean that we throw caution to the wind, throw health and safety out the window. What do we do to make sure the person has the best and up to date information in a way that is accessible to them for them to make an informed decision about what they want to do. That's where I think we really need to be focusing on when we talk about person-centeredness and person-centered planning, often person-centered planning is reduced to this one-hour meeting one time a year where we all sit around a table and sine some bureaucratic paperwork.
And, yes, that is it. We have to have those things to get funding. It is so much more than that. I really like the concept of ongoing person-centered planning how do you bring that plan to life and make sure it is actually meeting the person's needs, 24/7, 365.
JAMES ORMAN: Well said. Well said, Nick. Before I go to a question for Lauren, I want to ask Tracy a question because Nick's response triggered that.
Tracy, is it ok to make mistakes every once in a while and if so, why?
TRACY BUTLER: Well that's just like Nick said. We grow from that. Every person no matter their support needs and deserves a chance to have dignity to grow from the mistake and make a choice, make it not maybe work out the way they thought and have the support to work through that and figure out what is best, you know, way moving forward for them.
I think so often in this field with keeping people safe we forget that people deserve the right to have dignity and make choices. And we say oh, wow, you know, they won't understand well how do you know unless you give them a chance. How did you learn from your first mistakes?
Did you to everything perfectly? Think back to when you moved out the first time, did it go as well as you thought it would?
(laughter)
>> Often we think for people with disabilities well there's not supposed to be any struggle in that. Well then how do people get those skills. So we just automatically take that right away from them and I think that's wrong.
JAMES ORMAN: Yeah well said, Tracy. Kind of going off that, Lauren. Is there a way that a person-centered plan can protect the rights of people with disabilities and, if so, how?
LAUREN DIMARTINO: Yeah. I mean I think, you know, it feels sometimes you talk to other lawyers about person-centered planning doing that type of work it feels tangential to the type of litigation that attorneys are doing I this person-centered planning is a fundamental building block and access to disability rights right? The fundamental way that people can get services to live in and enjoy society to actually exist in society, you know, and fulfill the mandate of Title II, the mandate for receiving services in integrated settings Olmstead mandate to live in the community and live meaningful lives in the community.
I think that there's like a fundamental right to access that and person-centered planning is at the beginning of that. I didn't mention when I started that I have an adult sister with disabilities. My whole life I've been kind of talking or in the conversation with my family about the receipt of services.
I think that's a reminder this is also like an economic justice issue, right? It can't be that the people that have families with means to hire people to provide those services or to join things or you know whatever it is that it might be in a person-centered plan get to take advantage of those opportunities.
So I think that there's a lot of ways that this is like the access point to a lot of other rights that people with disabilities have to live with dignity in the same way that everyone else can.
I also you know, I'm sure we're going to see this in other states too, if we are, I haven't been paying attention because Maryland has been on fire. I've been focused here.
I'm sure with state cuts we'll continue to see this issue come up everywhere.
I think as a result we need more attorneys that are able to guide people through the process of appealing, denials or you know, these ongoing in Maryland, ongoing requests for clarification that at some point advocate needs to I think get involved. Right now, this is just there's still so many cases. Our firm is getting bombarded.
That's an access thing too, not everyone has the money to hire a private attorney the more people in the loop in this conversation the better. The better it will be for everyone.
NICK BURTON: I think to add to that you know the person-centered plan is this document that I said earlier is kind of a bureaucratic document everyone has to sign to authorize to release the funding. It is also whether you're going through an appeal or you've been denied something or you're talking to an attorney or you go to a hearing.
It is the first thing that people ask for.
Let me see the plan. What's authorized in the plan?
And that's the importance of making sure that the person's true needs, their wants, their requests are clearly documented in there. It is reflective of the person needs and wants and beliefs they should have in their life to be able to be the most independent they possibly can and to be able to live independent in the community.
That is also another reason why it is so important that plan to be truly reflective of the person.
JAMES ORMAN: Yeah, absolutely well said. The idea of a person-centered plan playing a role in rights to protect the rights of a person with disability there are some regulations that go along with that, to ensure the rights are upheld. Can you tell us, Nick, what are some of the regulations that are required for person-centered planning?
NICK BURTON: Yeah, so you know, I'm not a lawyer. We have my friend here. You know, part of the rules and regulations, both at the state and Federal level, that really guide what a person-centered plan should look like and what needs to be in it is one is the code of Federal regulations outlines kind of what a service plan should look like or a person-centered plan should look like.
It also outlines the roles and expectations of traditionally what we call a case manager in Maryland. We call them a CCS, Coordinator of Community Services.
And then also the Medicaid Waiver that is approved by CMS outlines the expectations around planning what is allowable and not allowable in terms of services that are authorized in the plan.
Then, of course, each state has their own regulations. So in Maryland, we have the code of Maryland Regulations COMR that outlines what is also expected to be in a person center plan. Really at the end of the day, the Federal regulations and rules say that the plan needs to be reflective of the person's needs.
It needs to be the person needs to be at the table. They need to be apart of that. It needs to be reflective of their disability and it needs to be reflective of their medical needs, their risks.
Those need to be identified.
They need to be mitigated. It also says it needs to reflect their cultural values and preferences there needs to be documentation what to do if the team its agrees within the team meeting.
And then, state regulations just kind of reinforce that and then in the waivers -- the home and community-based settings waivers that is further outlined what that process looks like, it needs to be annual.
What else is there? I'm trying to think what else? Who has to be at the table?
The person, the case manager need to be at the table. The fact it needs to be approved all those thing are outlined there. The most recent regulations have been passed that impact that person-centered planning process are the human and community-based settings final rule. That really talks about that people need to have space in the community that does not represent an institutionalized setting.
Whether that is at home or that is at work or just being in the community that we ensure people are really living in home and community-based service settings. Sometimes that looks like having a lease within your house or a lease agreement.
That also looks like having choice, that looks like having a key to your door so it is not locked and someone else doesn't have access to your food, to your personal space. Doesn't tell you how you can decorate, so certainly a lot of rules and regulations that kind of guide that process that are then outlined for people to be able to follow while they're doing person-centered planning.
JAMES ORMAN: I like that, I like that. You know, Nick, the person-centered planning process, of course, being person-centered it is composed of people. What are the primary roles and responsibilities of those people in the process?
NICK BURTON: Yeah. So in the IDD space we've often thought of person-centered planning as a team approach, I know in other spaces they don't consider it as team approach. I'm working in Maine with the Behavioral Health Department a lot of the team concept is really the person and their case manager who are often making decisions.
But in the terms of the IDD space I think that's important to look at the team perspective and so the roles around the table at the person-centered planning process are of course, first the person and they really direct the meeting.
They should be directing the meeting who is there, who isn't there, what is being put into the plan and where the conversation is being had, how the conversation is being had and what services are being requested and not requested. Then down to -- I don't agree how you want to mitigate those risks or I don't agree to that behavior support plan or I don't agree to that nursing plan you want to put in place.
They're really in charge of that.
The next most important person at the table is the case manager. They're the ones that the state has designated as the person to help facilitate and develop the person-centered plan and ultimately submit to the state for approval. Some states do things differently.
Most states haves some sort of approval process that is facilitated by the case manager.
Another important role of the case manager is post-approval of the plan is to monitor to ensure that plan is being implemented the way it is written and that the services are being delivered in the way that they're supposed to be delivered. The other people at the table really is dependent upon the person's preferences.
So often times if they're receiving a service from a community provider that provider will be at the table to provide insight.
If the person has a guardian they're often at the table.
And if the person has any friends or family or co-workers or colleagues or loved ones they want at the table, they're often invited there too.
But again, it is all at the request of the person.
The three most important signers of the plan are the person, the guardian, if they have one, and the coordinator of services.
JAMES ORMAN: Yeah. Yeah, good break down of all of the roles there, Nick. Tracy, I want to go to you next. Nick brought up some of the things that the person, who is -- for whom the plan is for. They have to make a lot of decisions and they have to do a lot of preparing. So what are some ways that self-advocate can best prepare for their person-centered plan.
>> I think it is better to highlight preplanning think about it before the meeting. Think about what you want. What you might need to be able to accomplishment what you want. Who you might have to be there.
I know when I wanted, I needed to move into a house I was renting, I had a goal to move but -- because I wasn't able to buy it was harder to find like a realtor to be able to support me in looking for an accessible house.
And so sometimes you have to change that plan. That's another important thing. The plan has to be a working, living document. It can't be just something that we fill out and I think everyone saw that once COVID hit. Everyone's plan had to change.
And so that people need to understand that they can call a meeting any time when their life changes. If things are not working with the plan, they can get support to figure out why things aren't working.
And put people in place to support them with that. I think, again, it is a lot harder for people to understand that process because so often it was one time a year we meet. We sign all these documents and everyone at the table agrees and I'm not even sure who all these people are.
NICK BURTON: Right. They might pat me on the shoulder or you know especially if a person has alternative means of communication, you know? So I think it is just to understand that the plan needs to be, you know, it's a living document.
It doesn't just -- it is not a thing you should shove in a drawer and just forget until the next year or as to when some documentation has to go in.
It has to be really reflect of the person because life changes, it needs to change and people need to know that they have the right to do that.
JAMES ORMAN: Yeah, absolutely the ability to have a plan that as you said lives with the person is so critical. But, Tracy, I want to ask you next. Have you either experienced a situation yourself or do you know of anyone that experienced the situation where in their person-centered plan there's been a conflict either one of their support people says that a certain thing shouldn't be in their plan or other things.
How do you work through that as a person being supported, how to you work through something like that?
TRACY BUTLER: I think, I'm a big advocate of mentoring and I really think people need to have support from the peers, to learn about, you know, how to work through that because -- and we have a big training curriculum we do around advocacy. I think that helps.
Again, when people communicate in alternative ways and it is harder to get those needs, desires out there for everyone to know.
It really is that team approach of people knowing people from different areas because I know James we work together. So you know me different than my family at home thank goodness because you know but so pulling all those people together to get different perspectives on what is happening with the person and what ways they let their preferences to be known.
That's another thing that is so hard when people communicate, alternative ways every single person in the world communities. It is just are we listening and have we figured out how to listen.
JAMES ORMAN: Yeah, absolutely. And, Tracy, that extra element there of that team approach to speaking up, right? Like you have to be able to speak up if you're having a plan being made.
But to have a team that says it's ok to speak up you can communicate to help with that.
TRACY BUTLER: To empower you.
JAMES ORMAN: Yeah absolutely.
TRACY BUTLER: Especially if you're going against particularly if it's family members you know? That they see you one way you want to grow a little bit in this area. It can be kind of difficult for the person, right?
And traditionally unfortunately I think our providers have given too much preference to families, sometimes over the person's wants, needs and desires.
And I just think that's because the whole thing of health and safety we all need to do that. We also need to respect people's individuality and what they want out of their lives.
JAMES ORMAN: Yeah that's a great segue to Lauren. The next question I've got, you know, that balance between trying to keep a person safe but also making sure that they're centered in their plan means that sometimes you approach that legal rights boundary.
But what are those legal rights in the person-centered planning?
LAUREN DIMARTINO: Yeah I mean I think of it as kind of in three buckets. So the first is like who can act on the individual's behave. I will say the most restrictive relationship, even like a guardianship which literally shifts decision-making authority to the guardian still requires by law that the wishes of the individual be respected so that is like, the continuous thread throughout this all.
Even though there's -- in Maryland for example, you know, this may vary by state I think it's fairly common you know you'll have these by statue, authorized representatives for the individual, who can represent an individual in this process. That goes in order of -- it's a little bit of like seniority, first and foremost, the individual requesting the services.
Next would be the legal guardian.
After that, if a legal guardian is not available, it would be a health care surrogate. After that, is someone with power of attorney and after that is like a person's attorney or paralegal.
We're talking about adults receiving services, right? I think that's obviously different if a parent.
A parent would be the legal guardian in that situation. A legal statute will lay this out in more detail. There is also the ability if none of those people are available is to help the individual lacks capacity to advocate on their own behalf, there's no designated authorized representative the organization providing services to the individual, may act on their own behalf if they're acting in good faith, there's no conflict of interest.
So like financial benefit. That would be taken into consideration then, another really important right is, once a person is receiving Medicaid services they cannot be taken away without due process. So once you're in receipt of those services that creates a right.
And that requires if there are -- if services are going to be taken away, that formal notice is received. That is, I think, very important right now as we're seeing a lot more denials whatnot, is a formal denial, right?
Some of what we've been seeing is, the state saying like asking all these clarifications and you're not getting approval.
It feels like a denial but there hasn't been that actual formal notice that allows the person to appeal or also there's a little bit of bargaining going on. We'll approve this if you are ok with waiving this. That is not a valid formal denial. That's a due process.
>> Is the Federal government negotiating in that way or is that a thing that is supposed to happen legally?
LAUREN DIMARTINO: It's the state doing it in this instance.
> Ok. I got it.
LAUREN DIMARTINO: It's not supposed to happen that way, unless there's a formal settlement. There are situations if it goes to a -- once you get the denial for example you want to appeal it like you don't have to go through the Medicaid for hearing process. If you would like to negotiate a settlement saying that's fine.
We'll accept this.
But in the process of getting that denial, folks, there were instances where organizations were having to beg for denial notice. This clarification process was going on forever we just need you to say no, so we can appeal this. So that's an important step in the due process rights of the individual.
Third category is once a person is in a waiver program, right. Once they're receiving Medicaid services, that person has the right to receive what is medically necessary that's the standard that becomes important on an appeal. If there's something that is medically necessary that the state has denied, that's the argument.
Like, why is this medically necessary, that's what you want to think about even if you're in a position to assist an individual with applying for services. Like that's the standard we want to focus on. Why is this necessary?
NICK BURTON: Just to add I think a couple of those things into what Tracy was saying earlier. I think one of the biggest disservices we have done to the people with disabilities in last 25-30 years we've really kind of seen home and community services take shape is allow them to believe and think that the person-centered plan is no big deal. It is something you sign once a year.
That is the biggest lie we have told as a system because it is everything.
It is everything. When you go to an appeal or when you're going through the denial process, it is everything. We have people in the State of Maryland right now, that have had dedicated supports for their behavioral or medical support needs have kept them safe in the community, kept them out of a hospital, out of the psychiatric unit being denied.
But they had supports in place for 20 years being denied for services. We've had people being told, four, five, six, seven times and in some families feeling threatened if they don't take it out they're not going to have DDA services.
I think this whatever financial impact the state is having, either here or Oregon or Montana or New York doesn't mean we take it on the back of people with disabilities. I think the aspect is important to make sure we don't believe it for something as they sign once a year and we shelf it. It is something we actively engage with all the time.
>> Curious what was the grounds given for denying this person services after 20 years?
NICK BURTON: Didn't meet the need.
>> Ok. And what -- was there --
NICK BURTON: Family certainly is going through an appeal process. And, you know, this is the stories you shared are one of many, I mean, there are 18-20,000 people receiving services in the State of Maryland and the level of denials that the state has seen in the last year is unprecedented.
LAUREN DIMARTINO: I think even the past six months such a significant up tick we have not seen how it will play out in appeal yet.
>> Can I ask a clarifying question to what you just said about the only standard that matters on appeal is what is medically necessary. Why is that if the whole point of a waiver is home and community-based like where the services are provided. Why would medical necessity be relevant?
LAUREN DIMARTINO: I'm not sure. I mean, it may not be the only -- this is the schedule standard what is being denied is they have already qualified for the waiver. That's like a different level of requirement, right.
Within that waiver there's a broad range of services from someone who needs, you know, more serious care to someone who needs to be checked in once a week. So the standard is just different, when you're getting a service, the necessity of that service so like we're seeing denials for like you don't really need that --
>> It's not medically necessary it just necessary for ADL or supervision, or whatever?
LAUREN DIMARTINO: Yeah. I mean --
NICK BURTON: It's insurance, essentially. It is funded through Medicaid.
>> So there's an insurance portion of Medicaid there's also the waiver part which is not insurance it is money for humans to take care of you.
NICK BURTON: Right. When they're looking at need they will often look at, is this related to your medical diagnosis your disability diagnosis I think it has often been looked at and referred to as medical need.
It is really need in terms of do you have first the questions is, is this specific to your disability? Right. Which is often a medical diagnosis, psychiatric diagnosis.
So I think, it is probably used more globally in terms of medical need but really being need. Do you have a need related to your disability.
LAUREN DIMARTINO: Is the need related to the disability I think because a lot of the rights due process, Medicaid rights are classified as medical. Like the need associated with the disability is considered the need the medical need. It is not necessarily like nurse -- but you know.
>> Real quick sorry.
Related to that, what about if you're denied for employment support services? Or -- sex equal education. Is it going back to medical need.
NICK BURTON: We're seeing a lot of people with the employment supports. The rationale when you really start to look at some of these you don't have a demonstrated need for that due to your "Level of disability".
Now they will certainly cite a variety of different rules or regulations within the waiver but, frequently what ends up happening is they will tie it back to you that don't have a demonstrated need based upon your disability.
And so again I think taking that a little bit, thinking about that medical need a little bit more broadly related to related back to your disability. But that certainly people are being denied employment supports particularly dedicated employment supports, to have an ongoing job coach because you don't seem to us to demonstrate the need based upon your disability to have that level of support in the work force which as we know, a lot of times will result in person loosing a job, it will become an impact on the on the job and the --
LAUREN DIMARTINO: There's a difference to demonstrate the need, where someone is able to maintain the employment without support, that may be evidence to show that this person hey not need the level. The level of need can be evidence by these different aspects.
>> I have a question about specifically with respect to self-directed you know we've been copied on listening sessions I attended that yesterday. Some of that came up with self-advocates in the meeting was the issue of cost neutrality now being an issue that in receiving these denials a lot of participants are being told that their plans are not cost effective, where the law really states it needs to be cost effective in the aggregate. How do we advocate for participant being told conflicting information even when the developmental disabilities administration does deem them medically, deem their services medically necessary they do meet all the eligibility criteria. How do we advocate for our clients?
LAUREN DIMARTINO: I mean that's a good question. I think one that is playing out, we have to see what plays out. I think part of -- we're going to be moving into this, but part of the conversation is around like in the appeal process like some of that is like a matter of law, right?
We're not, it is not so much like, demonstrating need you're saying under the statute, we're entitled to this.
Or this is not what the policy says or this is not what the practice has been and whether that's heard at the you know in the appeals or by heard I mean like received (laughter) is you know we have to see.
But like I have a hearing coming up it was -- we were told that it was like an emergency service. It was state only funds. So they weren't receiving waiver services.
And emergency came up with the increase in services, they're saying there's no money, because you're state only, I cited to part of one policy left off the second page which was like except in the case of an emergency right. (laughter) and it is like we could go to a hearing and I could just point --
>> I can print it out for you. (laughter)
LAUREN DIMARTINO: I don't know what else to do. Part of what I was going talk about is like kind of how to think through these things on appeal. Pre-hearing conversations are going to be really important, or reaching to the AG assigned to the case, like what are we missing here.
We're talking past each other I think sometimes that's an argument they have to make sometimes. It is hard to have justification for it any way. It is like, so now we have a pre-hearing conference scheduled, they have asked, can you do it tomorrow at 10 am which is right now?
No, sorry.
You know, what is the law say? Right. What is required?
What the pattern and practice this is what it has been doing and there's reliance on that and due process issues on there, it is more advocacy in that sense that may come in later in the process. You had something?
NICK BURTON: I did, self-direction really energizes me, the ARC is going through stuff with the fiscal intermediaries on that.
>> I'm not up-to-speed on this.
NICK BURTON: It's been interest to go follow it, here's what I say about self-direction, by in large, Nationwide it is the more cost effective service.
How is it not a more cost effective service? Studies have shown it is a cost effective service. I think states are not ready for it, right?
Because again it is putting people very much in control of what their services and supports look like, right?
Funding is a little less able to be monitored and judged over the year because people have budget authority in these situations. I think to your point about cost neutrality, what I think states particularly right now what is being left out of the conversation is, CMS is approved the waivers, demonstrating the waiver is cost neutral. First of all that's been demonstrated.
Second of all the legislature, particularly in Maryland, approved and put into law the current structure for self-directed services it was approved by the legislature in 2021.
It is being implemented as written. So to not follow it would be breaking the law in the State of Maryland. I think the other piece here too, though, in terms of self direction if the state has data that overall plans.
Self-directed plans are group homes are no longer part of the institutional settings they need to bring it down a forward. Yes there needs to be tweaks and probably needs to be re-engagement with Medicaid. Right now, none of that data has come forward.
>> Thank you.
LAUREN DIMARTINO: Everyone familiar with self directed? Make sure we didn't need to back up.
>> Right now in the media they're saying that the huge budget deficit in Maryland is that the self-directed costs have been much higher than anticipated.
You're saying they're making those claims without providing proof? Is that what I'm hearing?
NICK BURTON: So um, I would never want to call the State of Maryland anything but what I would say is what has been demonstrated in hearings with the legislature is that DDA has admitted themselves to their own accounting errors over the last year or two, that have resulted in 479 million dollars cost overruns, additionally self-directed services are costing more.
But also think about the fact that self-directed services has doubled in participant participation over the last year. That's ultimately then going to start costing more money a year, 2,000 people were self directing.
This year 4,000 people are self-directing their services.
>> Post-COVID in New Jersey there was a huge uptick in people utilizing so it was looking like more cost but that's different than like cost effective of like there's ten times more people utilizing this but they're not utilizing the other thing and so, if you -- I don't know what the comparison is. Is there procedurally in terms of a person-centered plan, this might be the way Maryland set up against the state or manage the insurer depends what the service is? I was just trying to figure out where the -- when you're talking about the appeals with the AG like what the posture of where you are with the state layer.
LAUREN DIMARTINO: They're representing the state agency like DDA. Or Maryland Department of Health yeah.
>> Ok. Got it.
>> Can I ask a question about -- the delays in request for clarification which are delaying giving that could then appeal. Is there a strategy for families when they're in that case?
LAUREN DIMARTINO: Yeah. Yeah. So thank you forgetting us there.
So in the process there's these clarifications once you get the denial, there's -- or even in the clarifications I think that what could be done at that stage is what we're recommending is kind of an executive summary.
Right, because I think what we've started doing and I mean we as in like the disability rights community or the advocacy community is like just here's all the evidence right. Here's these doctor records here's this, here's this, there's a human on the end of this, doing this and putting a stamp on something. So we've been recommending somewhat of an executive summary almost like a little cover letter I love bullet points like this is what is necessary.
Here's what is changed since the last thing. Here is the evidence that supports these things because I do think that it will be helpful in directing the person asking for the clarification are to look in the packet. If they’re limited they're going through a million of them that will direct them.
I will say that it would be a starting point as a strategy. I would even go as far to recommend like in the initial renewal application package for the PCP.
>> That's good to know.
LAUREN DIMARTINO: Yeah we only have a few minutes. Would it be helpful to talk through the steps of appeal kind of quickly I don't know if folks -- ok. So once denial is received as I mentioned earlier you have to receive a final determination. It will say which services are being approved and denied and those reasons the best advice is to read that closely.
That should answer a lot of your questions.
There's then kind of two options. You can do a reconsideration which would be something you would do if you have new evidence. If you have like, if you see the denial you know, you had -- oh you know what I could provide this other doctor's letter or records that will answer that question.
You would take the consideration route.
Provide that new evidence, it does tend to be quicker. Once that -- it is still denied you'll receive a new denial letter with the option to appeal.
And then you could appeal. Alternatively you could go directly to appeal. If you don't have new evidence that it is going to be the only route available to you.
With the appeal you'll request a Medicaid for your hearing I believe it is 94 days within 94 days is the standard right now.
Historically, you continue to receive services if you file a request. So basically like if the plan was going expire you appeal you would, like the services you had were denied would stay in place until the appeal. We've gotten some calls recently that's not happening.
>> Us too with the auto extend -- it is a whole mess.
LAUREN DIMARTINO: Yes. I don't really have an answer yet how to address that or why or how illegal that is. That is very concerning.
Yes.
If services were granted on a term limited basis you need more time you need to appeal within 14 days of the letter. That 94 day period becomes much shorter.
>> Can you say that again.
LAUREN DIMARTINO: Yeah. If a service is granted on a term limited basis, you need more time for that term you need to appeal the decision within 14 days.
>> Ok.
LAUREN DIMARTINO: Um, you can self-represent, an individual can self represent an appeal, we also have the right to bring counsel. I think in particular, we're seeing the issues of law counsel is recommended the client I was talking about with the pre-hearing conference their self-representing got here, they said do you want to talk it out with the AG they started talking about policy and law, they said time out can I reschedule it. In this climate I'm like -- everyone start taking appeals on, we need more people doing this work.
Once an appeal is requested, the hearing request form you list the things you want to contest. You can state the appeal is within the time line we're doing all the right things, here's all the right things we're doing.
Then you would receive a hearing date. That might automatically include a pre-hearing conference but if it is not, if it doesn't, especially if it is purely legal issues you want to request a pre-hearing conference to ask for a briefing schedule. I want to get this law written out and to the hearing officer before the hearing itself.
In Maryland you do that by faxing the OAH. (laughter) in case anyone was wondering --
>> Still New Jersey too, like really? Still?
>> It's pretty crazy.
>> How would you do that?
LAUREN DIMARTINO: I don't know my legal assistant.
JAMES ORMAN: Go to radio shack (laughter)
LAUREN DIMARTINO: So you can do that request a pre-hearing conference.
You have the right; the individuals have the right to examine the entire case file and any documents or records the state is going to use at the hearing.
So you know, make sure you're getting that I believe it is 10 days before the hearing. You should have access to that. We've seen them come later that grounds for asking for a postponement of the hearing.
But even if there's -- you're just advising self represented folks or not providing representation that's really important to make them aware of everything they are going use to rely on and make the decision you have the right to review.
And then the -- you also have the right before a hearing date to request accommodations, so if there's accommodations needed they tend to be mostly remote now in Maryland. Accommodation is needed for the individual or their advocate for the hearing, request those as well.
And then the evidentiary hearing is a presenting documents, evidence, witnesses. You want whoever is going it tell the best story why there's a need for the services; keep in mind they will be cross-examined but that is going to be the central. I know I'm blowing through, rushing through this I'm sorry but the burden is on the applicant.
So the burden is on the individual requesting the services, right. So it is a little bit higher of a bar.
You just need to be able to show why it is necessary, testimony, even another person close to the person requesting service maybe it is a family member can give examples how this plays without, what the harm would be without the service.
And tell your story. I mean telling the story is the most important part.
>> Are you finding that there's a necessity to have a medical expert in these cases? That's been a real hiccup, they're so expensive. And so what is your experience been when the necessity of having one or not?
LAUREN DIMARTINO: I mean, I think in my experience it's been mostly treating providers not necessarily expert providers have been brought in.
And they're usually pretty amenable to doing it.
So I don't know many of the examples where -- expert has been brought, we might with these shifts maybe it is more necessary I don't know.
NICK BURTON: We're seeing, I've seen it happen with sexualized behaviors in the community, mental health type behavior, mental health risk that pose serious risk to the community I've seen in those situations. I think you bring up a good point that like this is a horribly burdensome process for people and families. Wildly expensive.
And when you think about who can actually access this level it is few and far in between. You know I sat in many of hearings as the state on a variety of different things.
And they're bringing in binders of documents and information.
And the cross-examination on a family is just like you would see a cross-examination on anyone, right?
They're there to win for their client, which is the state, right.
And it just becomes a really defeating process for people and for families and so I think you know how do we, from a human rights perspective and access perspective, how do we get to a point where we can be avoiding these types of hearings frankly are not really available to many people.
>> Another question this might be going way off course but my experience in these was in my state which is a managed care state going against -- I spent a number of years dealing with four hours of nursing services against united health care. The recent news I was like I heard many clients say things before.
And I guess it made me realize I think to your point by telling the story how much sympathy I think given on their side given the reaction of things that happened towards the end of the year. If anyone is like thought about that or like, to me it is this place where we can get way more aggressive in telling our stories people because people hate this stuff like, um, I don't know. It is something I've been thinking about a lot, given how much knowledge is in the room I was curious if anyone else has done anything around especially the last four months?
NICK BURTON: Well Tracy the DD community this year was faced with here in Maryland, 657 million dollars in budget cuts, which is in part driving a lot of these denials right now.
But over 2,000 people showed up on the Mall recently to protest and it caught the Governor's attention and it caught legislators attention, they took care of and restored the budget cuts of 200 million dollars for fiscal year 25, there still are 300 million dollars in cuts still on the table.
But the voices were heard, right. And people were coming to the table. I think the legislature if you go back and watch any of the hearings to your point, legislatures calling out the state, what they're doing.
So it works. People's voices works and Tracy I don't know if you want to add to that.
>> Our community will rally together; it will stay together. That was so powerful just being on the Mall and having a legislate or who is part of the community to come out part of our support I think it really says how strong how strong we are and how strong our voices are, if you get us one by one we're a lot weaker. Put us all together this is happening in all --
>> Exactly that's a super helpful example.
NICK BURTON: We did this example by a very fun PowerPoint. We did this for 140 people, even these things, these conversations that we're having now 20 people in this room walkway understanding if you didn't already right the impact this is having on real person and so you telling more of your people in your community or still having this conversation in different spaces is important to be doing.
LAUREN DIMARTINO: Yeah.
And I think I mean sympathy right, empathy right. There's something it crosses -- dairy say a little bit of a bipartisan, this is easiest conversation to have on the people of the opposite side of the aisle where I stand politically.
This is also so bureaucratic. It is an interesting conversation, how do we decrease the bureaucracy, it a spending issue which is the fundamental problem.
But I think because it spans different kind of families different kinds of demographics you get some people that have bargaining power to show up at the table, have the ears of senators and Congress men, that helps the story needs to keep being told. In any legal setting in the appeal administrative judge is human, right. There's some -- especially in these matters are not very clear in terms of the law or rights, right?
It is like we need to tell stories so folks err on the side of the services that are needed. Any other questions?
(pause for questions)
>> Like if you you're living in a state where managed care is a predominant paradigm over a person-centered planning, do the principles we discussed how usable or transferable are they to other contacting working with HCBS waivers or other services.
NICK BURTON: So I think a couple of things. One is, we're starting to notice in the field where more managed care states recognize that this is a complex group of people that require a much more thoughtful consideration of needs.
And they are often now asking for more person-centered planning training for their managed care team members.
So I think you're starting to see that I think to the ladder part of your question?
>> That was the main one. That is the main one for that question I have more questions.
NICK BURTON: Oh, well, shoot! Go.
>> Ok you mentioned guardians can be involved in the planning process, isn't that inherently a contradiction the guardian may have a right but is not the person.
LAUREN DIMARTINO: I don't know it is contradictory so much, the idea about radical person-centeredness, even when guardianship is in place, the decision has to be the right of the individual. Very often the standard to get guardianship is you know very often the situation is the ability to kind of understand and consent. So the idea of having the guardian there is someone who can help make decisions in the case that someone is not able to communicate their wishes or desires.
I think there are situations where is problematic the goals of the situation I think are like how do you incorporate the needs and the wants and the desires of the individual even when there's a guardianship situation in place.
NICK BURTON: It poses interesting questions certainly I think, regulations rules and policies need to be update today reflect more of a person-centered approach to these types of things because for example I know a few years back there was a provider working with the person they were respecting the person's wishes about informing someone about something, and the guardian got wind of it, filed a complaint with the licensing entity and the licensing entity cited the organization.
And so --
>> Goodness --
NICK BURTON: Licensing entity by letter of the law said guardian had the right to decision if that was A, B or C they got cited. Whether that could have been taken further in terms of you know with an attorney certainly could have been but, that the point in time the agency had to take the citation and put a plan of correction into place that essentially put into policy saying we will only engage with the guardian on decisions or what they will say to people, which then puts really puts everyone in that agency kind of at risk of not truly engaged in person-centered planning or person-centeredness with the other guardian in place.
JAMES ORMAN: Possibly further rights violations.
NICK BURTON: Possibly further rights violations.
LAUREN DIMARTINO: I think we are overtime a little bit.
Thank you so much for being so engaging and -- so insightful.
NICK BURTON: That went so fast.
>> Thank you.