SARAH LAUNDERVILLE: So I want to talk a little bit of the overview of funding, and you know, I should start with saying, you know, if you're looking for the magic bullet, it's not necessarily in this presentation but hopefully this will help you guide a little bit and give you some ideas to think about, thinking around fund being.

Our first option is to use our core CIL funding, right?

This is something we're supposed to be doing.

This is not, this is not a special programming that we're setting up.

This is, this is something that should be embedded that we're supposed to be serving all folks with disabilities, so that really needs to be something that you're looking at as a priority.

And make a commitment to serve all people of disabilities, and if you're under serving folks who have psychiatric disabilities, make sure you're making that a priority in your state plan and at your center.

There's a section of the State Plan for Independent Living and if you haven't been part of that process, really connect with your state Independent Living Council.

Ask them, how do you get involved with that public process?

Because sometimes you might not know, and I was looking, is Mike in the room?

Folks here who represent SILCs in the room?

So like connect with folks who understand that SILC process as well, because if you're not being included or your center somehow not at the table to help develop what that state plan looks like, that's where all the resources, the funding goes, and so if you're identifying psychiatric disability, as one of your underserved populations, then that is something to help out.

Look to your state Department of Mental Health's, some states are paying for peer services, coalition building, prevention ideas, recovery centers and training, so you want to check in with that local department, and then checking in is just the beginning.

The advocacy part is the next part.

If you're finding your Department of Mental Health is, and I'm going to guess in most cases this is true, that your Department of Mental Health is disproportionately funding hospitals and other traditional services around treatment for folks who have psychiatric disabilities, and you need to be in there with that strong voice, build that voice, build that coalition and talk about how money really needs to come down to your center around to this, so sometimes that's a place where people are not looking or even asking.

Your state legislature is another, and we all are having obvious budget problems, but if you're not making those relationships now, if you're not connecting with people who have access or can help you have access to these things, even in the most troubling of financial times, then you're not even, you know, you're not even around, so it's like if you're not at the table, you're on the menu, the, the thought process, so chances are that general funds are going to medical work, for medical model work and mental health so you want to work with that legislature and demand equality and funding for peer and recovery services.

Justin talked about, you talked earlier about success they have had around that.

United Way, has, anybody getting money from United Way organizations?

A few of you.

That's another option, and we're seeing in Vermont that many United Ways are moving from what's this community, to a community impact model, and so what that is, instead of funding the organizations and programs or services, they're looking at what is the need in the community?

And then they're funding it, that particular need, and has that happened with, with the folks who said they're getting United Way money or even if you're not, have you seen your United Ways move in that direction?

Sure.

So the other, the other thing is getting in there and advocating for what the need of the community is.

Because, oftentimes United Ways can be really siloed and think they know what the needs of the community are.

They might not doing a true needs assessment.

Like for us, as a center for independent living, we go in and talk about when you do your next needs assessment, can you send it to us so you can send it out to the folks we know?

Are those United Way organizations reaching out to all the underserved populations in the community and if they're not, advocate to make sure you can be part of that process.

Ruthie?

RUTHIE POOLE: I have a quick question, Sarah.

Have you guys had luck with like hay market peoples funds, that funds, there are social justice funds.

It's not like you are going to get a lot of money out of them, you are going to get 10,000 bucks, but there is not enough Vermonters who apply for money from hay market, they're New England but all parts of the country have your local social justice fund.

And so what if you're doing really social justice.

They don't like service, frankly.

They want social justice.

So have you guys gone for that money?

SARAH LAUNDERVILLE: No, and we should probably get that information out to everybody so they know, know what that group is.

So another option is we talked briefly yesterday about SAMHSA money.

And so there's some grants available that you would want to look, and this is one of those places where you're going to want to partner with other organizations.

If you're not currently doing a great job around this issue, then you might want to partner with an organization on it.

And I talked yesterday about some grants that they have that they look for the leadership of your organization to have at least 51% of the leadership and recovery or mental health lived of experience, so ask that, you know, of your board members, work with your board members on those questions, so there's lots of board members who have dual diagnosis or have been through the mental health system and it's not their primary disability, but there's a connection to that, they just want to make sure the leadership represents some of the community impact work that's being done, and, yeah, it's a great opportunity to partner with other organizations because they need our voice at the table as well, right?

Then there's a bunch of foundation grants.

I'm not going to read individually, but on slide 66, there's a couple of options for foundations and as we go further, there will be more.

One thing I wanted to caution, be careful who you apply to, and like other grants, make sure it's a vision and mission match.

Don't chase the money.

I think that's so much a problem that not only centers but other nonprofit organizations do.

That we move away from our advocacy-based mission to being too technical of programs and services and not, you know, getting to the heart of what we really need to be all about, so be really careful about every time you accept any of that money, any of the federal government money, any of that, it's going to change, and there should be a thought process at the board level when you're seeking out new funding options, to really talk about that, take the time to talk about that.

Like if I accept funding from this particular organization, what are some, you know, unintentional consequences that might come out of accepting that money?

Right?

So, and see if they grant other peer programs or fund medical model approaches.

See who you're aligning yourself with overall.

And then on page, on slide 68, there's a few more foundations that say on their websites they fund mental health work, so you can check those guys out.

And we're going, same on page 69.

We're going to talk about some of the Medicaid reimbursement work.

I feel like I missed something.

One of the things on slide 66 that I just wanted to touch upon is hospitals are looking for ways to collaborate, so look to your hospitals as a way, there's the health care system is Medicaid, all of that, other presenters are going to get to that I know very little about, but the hospitals themselves often have a foundation, right, because they have to give back to the community, and especially with Affordable Care Act and figure out ways that you really connect, and so I have on here ER cadre and that's something that we're doing in the northeast kingdom of Vermont where folks who have lived experience that worked for designated agencies or don't work at all that they're going out to the ER, so say somebody is called, the police are called, and they bring them, or they bring them by ambulance to the ER and they're trying to decide if that person is going to be institutionalized or not, we have peer workers, who will go out to the ER and have conversations.

I was sharing with Dan, that there was this really great example I love to tell, a guy was having a really hard time, and he ended up in the ER and one of these peer workers who had an existing relationship with the guy was called in, and her first question was, are you hungry?

And he said, yeah.

And he said, she said, turning to the police, and just said, you know, is it okay if we go?

He said, I guess, he was kind of hesitate with the whole letting him go sort of a thing because that's very scary thing for police officers to do, when someone is in crisis.

She said, great, we're going to go have an Egg McMuffin and they went off and had an Egg McMuffin and had a talk and he was not admitted to the hospital and that's not a unique case.

We need to get, it's not, I wish we could fund Egg McMuffins like I was hoping, because ADAPT, they get food from direct actions, from McDonald's, so there's some connections there, but I, I think that you know, the relationship that is already established, the connection when someone is at crisis point, access to basic needs, food, sleep, all those things that you don't always get right in the hospital setting and that connection, that conversation that happens, and you know, that saved a whole lot of trauma that that guy was about to go through potentially.

Ruthie?

RUTHIE POOLE: I was just going to say, when I've done that kind of work, very often a big concern for people is their pet.

If they live by themselves in an apartment, who is going to take care of the cat or who is going to take care of the dog, and that can be a huge issue for people who live by themselves.

SARAH LAUNDERVILLE: Mike also talked yesterday a little bit about mental health block grants, so that's something you can access and he can talk a little bit more if you want.

When you're going out and sort of designing these projects, again, I just want to keep saying over and over, find out from the community first what it is that's needed.

Don't assume.

And then there's these other options, and you know, I think looking towards, you know, folks from Hawaii brought up work, supported work and you know, I was thinking yesterday about this a little bit, that there's different groups within state government that you might not really think about in terms of accessing money, and it doesn't have to be, you know, I want to say, one group we're really working with is our tourism department, overall for increasing marketing around folks with disabilities coming to Vermont, and so we just, the tourism department really got on board with this, and they put up a website called inclusiveVT.org, I think, and highlights some folks, and that started two years ago, when we went to the, to the tourism department and said, boy, you have no people of color on your website, you have no people who have disabilities, no same sex couples on your website and I'm just talking about pictures, let alone the whole getting down to the core of what this looks like, and when you're talking about these real things, like when we're marketing Vermont, I want, I want my people nationally to know that you know, JPeak is a great place to go, and it is accessible, people can come and have fun at their accessible water park and go skiing, all these things, right?

And that's not represented in tourism, so we worked with them.

But it takes a while to build these relationships, and get to a point where you know, that call comes and says, you know what?

We're going to fund this because we have an opportunity right now to do that.

And that can happen, like we do a lot of supported employment where voc rehab is putting out money to the mental, in connection with the Department of Mental Health and putting them out to the designated agency and having programs like that so really finding and making connection is what it really all comes down to.

And I, and I can't highlight enough that this is in my opinion not a separate program.

This is not, this is not something different.

This is something that we should be doing.

So I'm going to turn it over, I think, to Justin.

JUSTIN BROWN: So Dan is really the, oop, am I going, Dan is the expert on Medicaid billing, but I'm going to prepare the way a little bit, just to talk about our own independent living program and our experience, also Boston has had experience with what's called the OneCare demonstration project, so it's a pilot program.

It's about people who hold eligibility, both for Medicaid and Medicare, and in some ways it may be the future of managed care.

The independent living centers around Massachusetts have really bought into this, and our independent living center has a contract to provide OneCare, and I'll talk a little bit more about that.

The recovery learning communities, those 100% lived experience peer to peer programs have not bought into this.

And so I want to talk a little bit about the pros and the cons, the risks and the benefits.

Some of the cons, just to start off with, it's distributed through insurance companies.

In some areas, we have multiple insurance vendors, and that offers consumer choice.

In our area, we only have one vendor, so there's no choice, and in some cases, our folks are being forced into this system against really their wills, and had to fight back to say, no, my provider is not a member of your insurance network, I don't want to be part of this.

Part of what we need, if this is going to be effective, is actually to have health care providers buy in to the system, so a lot of health care providers simply aren't participating.

But what are some of the exciting things?

So one of the exciting things is that this could be a funding stream for one on one peer support, so we've talked about the process of becoming certified as a peer specialist.

Independent living programs can offer one-to-one peer support funded through OneCare, and that's what we've been doing.

Now, the billing process for us, our contract was $9 for 15 minutes, so that's like $36 an hour.

It sounds okay, except when you start thinking about travel, overhead, supervision, all the costs associated with running a business, it's simply not sustainable.

So for the first year we tried this demonstration, probably lost a lot of money, a lot of money, because the reimbursement rates were not adequate.

We've renegotiated our contract, and we're hopeful that, in the coming year there's some cost reimbursement built in that we'll be able to make this happen, and I just wanted to kind of acknowledge the Boston community IL, and you have a much more hopeful view.

I'm a little skeptical still, frankly, can you speak just for a minute about why you see OneCare as such a hopeful opportunity for funding peer-to-peer support.

AUDIENCE MEMBER: I'm a starry-eyed idealist.

I've been involved in OneCare since before it began, as I think Ruthie has been in some capacity.

RUTHIE POOLE: Yeah, it took about, probably ten meetings to really understand what anyone in the room was talking about, frankly.

AUDIENCE MEMBER: Absolutely.

So I also want to start with a little bit of historical perspective, when the state first announced maybe they were going for this, what they did, put out a request for information asking interested parties to talk to them about how it should be developed.

Ten minutes after that RFI was released, pretty much, Dennis, who is the guy Ruthie was talking about, who quit rather than report on Tewesbury State Hospital, called up a bunch of people in the community.

My boss called up a bunch of people in the community and founded what is now known as did DAHR, Disability Advocates Advancing our Healthcare Rights, it's a broad based statewide coalition.

Most of the independent living centers are members.

Several of the recovery learning communities are members.

RUTHIE POOLE: Not active.

AUDIENCE MEMBER: Okay.

We'll go with that.

As well as some of the aging services providers, and independent self-advocate community and some independent consumer representatives.

So it is a pretty broad base.

A lot of areas of expertise and we as a coalition wrote up a set of principles for what, a successful demonstration would need to look like, and a lot of the language in those principles, ended up in the state's, the state's proposal to the federal government, and ended up in the contract that the state signed with the federal government, and with the insurance plans, so by getting in on the ground floor, we were able to shape the program in a way that many other states weren't able to do.

So I think the starting point for having a successful tools demonstration is getting there before it starts.

So one of the things we did was demand this role, which is kind of alluded to here, but kind of not.

For a long term support and services coordinator, on consumer care team members, enrollees, care teams who is a person who is not employed by the insurance company, unlike the care manager.

Who is employed by an independent community-based consumer-based nonprofit, mostly ILCs, and agent services providers, one of the recovery learning communities does offer this service, metro Boston RLC.

And that person's role on the care team is to educate the consumer and the rest of the care team about nonmedical options and services in the community, and that can be anywhere from PCA to peer treatment, to how to find a free filing cabinet for the small business you're starting.

And then to advocate for those services, that the consumer identifies, that they need, to be included in their care plan, and then monitor how those services are provided.

So that's not the same thing as the peer counseling or peer support service.

The peer support service is one of the things that the long term support services coordinator can hook a consumer up with.

And we've actually fought really hard to keep those roles distinct for the integrity of both roles, so that's kind of the background.

BCIL provides long term supports and services coordinators.

We don't currently bill for peer mentoring services.

Frankly because this figuring out how many 15 units of service you provide, nobody has time for that.

I'm not in it to do that.

I will say in order to make it a financially viable program without revealing confidential details, you really need to look at your actual costs before you sign the contract and make sure that however the contract looks, it doesn't fluctuate from month to month, so that you can build in a stable funding source and know next month how much money you have coming in and make sure that it actually represents not only the active staff times spent with the consumer but factors in the travel overhead supervision benefits.

Oh, yeah, a mechanism for getting out of the contract was something we negotiated super hard for.

If you have all those things in place, I think it can work pretty well for an organization.

I think it's slowly but surely working well for consumers as well.

JUSTIN BROWN: One way to summarize what you've said is that, as Dan will speak about, there's a lot of latitude in states' implementation of these new projects, so it's not all coming from the feds.

It's really activism on the state level shaping what this looks like, but even with that activism, there is, you know, the practical challenge of making these things pay for themselves, and often the rates simply don't work, and you have to go back and renegotiate your contract, and say, you know, we want this to work, we've got to have some better rates here.

AUDIENCE MEMBER: And make no mistake, this does in fact seem to be the way that managed care is going.

So whatever your feelings about that are, that is, like, Deaf community, there is a saying--train gone, that train in a lot of ways is already gone, so you better make sure, you are on the ground floor, so like you said, if you're not on the table, you're on the menu, it's coming, so make sure you get in there and shape it how you need it to work, without the advocacy of the disability community we would not have had that guaranteed position of a long-term services and supports coordinator, that wasn't employed by the insurance company.

It wouldn't have happened.

RUTHIE POOLE: Thanks, and Courtland, I'm really glad you said that and thank you, Nassira, because this is the way of the future.

I came out actually on Connie Chung back in '93, so I like to come out in a big way, that was because Harvard community health plan was a new HMO in Massachusetts, and they were on the cutting edge at that point of providing behavioral health care.

Now, not a lot of people had managed care, a lot of people had Blue Cross Master Medical, I don't think it exists anymore, frankly.

And now we all expect to have managed care.

So what Courtland is saying is exactly right.

The next population that the feds will deal with is Medicaid only population, and then those of us who have private insurance will be next.

But it really is this, this accountable care organization, managed care organizations.

In Massachusetts, we call them, what does ICO stand for?

Remind me Nassira.

AUDIENCE MEMBER: Integrated care organization.

RUTHIE POOLE: Integrated care organizations.

Basically it's insurance companies really saying what our care looks like, frankly.

I don't have the glass is half full but I love that you do.

AUDIENCE MEMBER: I just want to partly explain why I have the glass is half full approach.

I promise Justin I wouldn't go on too long but I want to tell a couple of quick stories about people we've seen in the past 18 months, demonstration has been going.

So we have one woman whose care team referred to her as a frequent flyer, who was in and out of hospitals every month twice a month, basically her entire life.

Her care team was able to pull in some peer supports, some additional talk therapy benefits that she wouldn't have qualified for because she was under the stupid six a year or whatever, so more intensive services and also help stabilize some of the other things going on in her life.

She just celebrated one year hospitalization free.

Yeah.

[ Applause ] We have another guy who was not leaving his house because he had panic attacks pretty much every time he stepped out.

He'd stop breathing, his heart rate would go up, he'd be afraid he was having a heart attack.

He'd get more anxious and it sort of went downhill from there.

Worked with his team to identify coping strategies in the moment.

One of the things he identified was, if he could just sit down physically and take some deep breaths while he was sitting down, usually he was able to stop it in its tracks.

The problem is, like, the grocery store doesn't really have seats everywhere, so what our LTS coordinator was able to do, say, hey, you know those canes that you can carry around with you, that have seats that fold out, can we get this guy a $100 seat cane so that wherever he goes, he can go out and know he has a chair to sit on?

And you would never think of durable medical equipment as being something that you would prescribe for anxiety but now this guy can go wherever he wants to go, and know that if he has an anxiety attack he can chill himself out wherever he is.

So one of the great things about this is, if you have a person or persons with imagination and drive on the team, you have latitude to use some of that imagination and drive.

So it depends on having good people, but that's our job.

RUTHIE POOLE: Thank you for the imagination, Nassira.

Everybody should have imagination.