With the New York State budget now a week overdue, advocates continue to press lawmakers to include funding for legislation important to their causes.
BTPM NPR Disability Reporter Emyle Watkins recently spoke with Luke Sikinyi, the vice president for public policy at the Alliance for Rights and Recovery, an organization that advocates for the rights and resources of New Yorkers with mental health conditions.
Watkins and Sikinyi discuss several issues mental health advocates are pushing for in the budget, including a cost-of-living increase for workers, continued funding for a Daniel’s Law pilot, a different funding model for services under long term care plans and protection for resources for people living in adult homes.
You can listen to the entire interview on this page, or read the transcript below.
TRANSCRIPT:
This is a rush transcript created by a contractor and may be updated over time to be more accurate.
Emyle Watkins:
Well, Luke, thank you so much for joining me here on BTPM NPR. To start, I’m wondering if you could talk a little bit about what the Alliance for Rights and Recovery does.
Luke Sikinyi:
So the Alliance for Rights and Recovery is a statewide and national mental health and rights organization. We are really focused on the people and what we can do to provide more support for folks who have mental health, substance use and trauma related challenges. And we do that through a number of avenues. The first that I’ve mainly focused on is around advocacy and policy. So really trying to support rights, create more access to effective programs with a particular focus on peer support programs. We also do a number of training programs to support the workforce and make sure that they have all of the tools for culturally responsive services to folks in community-based organizations or working with community-based organizations. And then we hold a number of events as well. So we do training events, some service provision like our PeerBridger program, which helps get people out of hospitals and really back into their communities without having to go back to the hospital.
And then a lot of advocacy work on behalf of our communities and bringing folks together so that they can really have a voice for themselves.
Emyle Watkins:
I know one of the challenges throughout human services in general is just staffing. And a lot of that comes down to these wages that are determined by the state budget and how much money is invested into programs funded by the Office of Mental Health, for example. I know this year they’re working on a targeted inflationary increase, what most people would probably call a cost of living increase. Can you talk a little bit about what the budget included for Office of Mental Health and other mental health supports as far as the TII, what you wanted and what you think you might ultimately get?
Luke Sikinyi:
Yeah. So I think to start with the TII, part of why a lot of our programs are struggling at the moment is because for decades we were underinvested in and the state did not provide a cost of living adjustment that was commensurate to inflationary increases. So over the last years, and the real large credit to the governor, Hokal, as well as the legislature over the last four years, we’ve consistently received some level of support through an inflationary increase. But last year’s inflation was essentially calculated at about 2.7%. And because we know how difficult this year’s budget with the funding cuts from the federal government have been, our advocates, the statewide behavioral health advocates have been calling for that 2.7% increase. This is really just the bare minimum that we need. This doesn’t account for all of the other increases that we should have received but didn’t, but we also know it’s a tough budget year for this.
So we called for 2.7%. In the governor’s proposed budget, she included a 1.7% increase, whereas a couple weeks ago when the legislature released their individual one house budgets, they both, the Senate and the assembly included 4% increase for all of this human service agencies, so all of the folks who are under the O agencies, if you will. And so we are really incredibly happy to see that. And right now what we’re doing is really pushing for that 4% to be included in the final budget and know that we have a lot of folks who are behind us. We are doing a number of actions in the capital almost every day so that we can continue to push it. And we’ve heard a lot of positives from the legislature. The question really will be when they’re in those three-way negotiations, whether they and the governor’s office are able to agree to find the money to really provide this desperately needed increase for us.
Emyle Watkins:
What kind of difference would it make on the people level of getting more than the 2.7%, especially because I know a lot of workers in the mental healthcare system are also people who have been through it themselves and are now making their living by helping other people.
Luke Sikinyi:
Yeah. I mean, I think it’s huge. We’ve seen an average turnover rate of about 30% in our programs. And part of that is because it’s been hard to keep up with rising costs for every individual. And for folks who are working in this space, many of who are making even less than someone might be making at McDonald’s. And we’re doing what are essentially, especially as the minimum wage has increased over the last decade, we’re seeing a lot of people at or pretty close to minimum wage salaries, but are doing work that takes quite a lot of dedication and energy and effort. So that’s part of the challenge of this turnover. So our goal here is the increase for both the agencies and the workforces to both raise salaries, but also reduce the burden on agencies to cover rising costs elsewhere, which can prevent them from hiring more staff, which means that with less staff, more of the people who are staying have to take on even more work and are more likely to enter burnout because we still have to serve folks.
And on top of that, it also means that there will be more people available to serve the rising demand in services instead of agencies and organizations and programs having to turn people away because slots are full and create these long wait lists for folks to receive services that they really want and need right now. So we’re really hoping to get that 4% so that we can see a little bit of more breathing room for our agencies and to at least keep pace with inflation so that we’re not losing even more staff.
Emyle Watkins:
I feel like every year there is often a little bit of debate over, do we put more funding into inpatient? Do we put more funding into community-based services or how do we balance that? I guess just more generally looking at this budget, what would you like to see in the final budget as far as a balance or a priority between those two types of services?
Luke Sikinyi:
I mean, I think for us, we are always pushing for more community-based support services, particularly because that’s where the majority of folks who interact with our public mental health system that most folks are receiving from nonprofit service providers and rather than hospitals. I think a lot of focus goes to hospitals because most of the wider community doesn’t really understand that most behavioral health services are provided in community-based care settings. And that’s particularly important because that also, those are the agencies and programs that really do the prevention work that can help people not even need a hospital or institutionalization in the first place. They are doing the housing work to help people get, who are struggling with a lack of housing or homelessness to get back into supportive housing or other housing programs to be stabilized. But they’re also doing a lot of the recovery services so that if someone does go to a hospital when they are discharged, they have recovery support services that can help them reintegrate into the community and stay out of the hospital long-term and enter and maintain their recovery.
So that’s where we have typically focused our energy and would like to see more effort and more funding go into for this year’s budget. It’s also part of the reason why we think the targeted inflationary increase is so important. But I think this year’s budget has been fairly good about, even though it’s a small budget, there are some efforts to support more of the community-based programs like a push to allow for co-licensure of both substance use and mental health services so that people don’t have to go from back and forth. And it also reduces a little bit of burden on the agencies so that they can provide both services without having to build to two different agencies and have two different licenses in order to do that.
Emyle Watkins:
I know a important service that your organization has really pushed for is Daniel’s law and crisis intervention. Can you talk a little bit about what we’re seeing as far as Daniel’s law in the proposed budgets and what your organization would like to see and a little background on what Daniel’s law is for people who aren’t familiar?
Luke Sikinyi:
Yeah. So Daniel’s law is proposed legislation led by Senator Samuel Bruck and Assembly Member Harry Bronson that would really change the way the state practices crisis response for mental health and substance use crisis situations. This really was born out of the death of Daniel Prude back in 2020, which was now about six years ago as of last week. And he died at the hands of police while experiencing a mental health and substance use crisis. He went to the hospital, was quickly released, but was still experiencing his crisis and was found running through the streets of Rochester naked. And rather than really offering him the compassion support that was required in that moment, police put a spit hood over his head and held him in the cold streets of Rochester down while still naked, which led to his death, and it was due to those actions.
And unfortunately, Daniel Prude’s story is not dissimilar to many others who have died because of police interactions during a crisis or been harmed because of it. And so after that, a lot of advocates, including ourselves and the Full Daniels Law Coalition, which really began in Rochester, but is now fully statewide, have been calling for a shift towards non-police responders for these types of calls. And through a lot of years of advocacy, one year we were able to get a task force led by the State Office of Mental Health. And through those recommendations from the task force, one thing that was recommended is to create both pilot programs to test this model out, which would be a peer and an EMT going to these calls rather than a police officer and peers being folks with their own mental health experience, but highly trained in crisis response.
The second thing that they recommended was the creation of a Behavioral Health Crisis Technical Assistance Center. And last year in the budget, we were able to get both things funded. So we were able to get $8 million with two million of that going to the Behavioral Health Crisis Technical Assistance Center, which has begun meeting in the last two months. And the second part was $6 million of the eight went to these crisis response pilot programs. And those three programs with two million each were awarded last month, so we’re going to see those start rolling out. But right now what we’re doing is trying to expand the number of those programs as well as make sure that the funding is there for longer than this one-year injection. So OMH, the state was able to stress the funding that was a one-time investment from last year for three years, but we know that there will need to be more funding to either expand the number of programs, which is what we’re looking to do, and also to maintain that these are consistent and that these aren’t just three-year programs and we don’t have funding for them afterwards.
So it’s really about the stability of those programs as well as the BH TAC. So this year we called for an additional eight million, and while the governor didn’t put anything in her proposed budget, in the legislative one house budgets, the Senate included 15 million for these exact purposes, with about two million going back to the BH TAC again. So what we’re pushing for at the moment is to include that full 15 million in the final budget so that we can expand the number of pilot programs. And we’re hoping to really get the support of both the assembly and the governor’s office in those final negotiations to match what the Senate put in their One House budget.
Emyle Watkins:
Something that is watched closely during budget season is what does the governor not include funding for? And then what does the legislature restore? I’m wondering if you can talk a little bit about what adult homes are and the advocacy programs that exist for them and what they’re facing right now.
Luke Sikinyi:
Yeah. So I think one of the biggest things here is adult homes are places, where folks who don’t have as much support and have either physical or mental health challenges and need essentially round the clock or are determined to need round the clock support. So many people end up in adult homes. I think a lot of folks think of this just as folks who are elderly and are there because of challenges due to age, but we also see a lot of folks with disabilities in these kinds of locations. And this year’s budget, the governor cut a couple programs that were really critical to providing rights protection and support and avenues to rectify wrongs that might have happened or mistreatment in adult homes. So the first was the adult home advocacy and resident council programs, which is only about $230,000. And this program helps residents fight evictions, the system that often is pushing, is more stacked in favor of the facility heads rather than the actual residents.
And it also allows them to organize councils to bring up issues that they’re seeing in their residences. And this funding also allows for legal support and help from a couple small legal firms throughout the state. The governor also cut the equal program or the enhancing the quality of adult living program, which is about $6.5 million. And this program funds essentially basic quality of life improvements like clothing, air conditioners, and capital repairs for people’s living spaces. And that has a requirement that residents have a say in how these funds are used. So this funding was also cut in the governor’s proposed budget. And the last thing the governor cut in her proposed budget was funding for the Coalition for Institutionalized Aged and Disabled. So this CAD, as we often refer to it, this is a group that advocates regularly with adult home residents in New York City, and they train resident leaders, organized councils so people can have a voice in the decisions and really supports them.
And this is one of the only organizations, or this the only organization that does this kind of work. And we want to make sure that this funding was placed back in the budget. So we were really thankful to the Senate and Assembly for rejecting those cuts that the governor proposed and restoring funds to both the Adult Home Advocacy Program, as well as the equal program. And the Assembly also restored funding for CAD, which was only about $175,000. So in total, all of these funds amount to about $7 million. And right now what we’re pushing for is for all of that seven million to be restored in the final budget so that we can ensure that adult home residents have access to advocacy efforts, legal support, and these basic quality of life improvement funding like for clothing and air conditioners and things like that, that sometimes the facilitator or the facility heads, the folks who run these adult homes don’t offer themselves.
Emyle Watkins:
Thank you so much. We only got to talk about a couple topics today, but I’m wondering if you had the chance to sit down with the governor and the legislature today and tell them anything, what would you want them to know heading into negotiations?
Luke Sikinyi:
Yeah, I think one of the other things that wasn’t included in the budget that I wanted to talk a little bit about was we joined many other advocates in the behavioral health space calling for a carve out of behavioral health services from Medicaid managed care. And particularly the reason behind that is because what we’ve seen with the managed care system has been a lot of lack of access. It was said that switching to the managed care system was going to create more access, really streamlined services. And what we’ve seen has actually been the exact opposite with a lot of folks being denied services unnecessarily. And then a lot of folks who, from the provider side, providing services that are needed by individuals, but then not getting the requisite payment afterwards or having to fight months and months and months to get the payment that they deserve based off of what they had provided and a lack of understanding of regulations from the MCOs.
So we’ve called for those services to be carved out and it could save the state about $400 million, which could fund things like the targeted inflationary increase, and also put that money back into those community-based services so that we can really deal with this behavioral health crisis. And we are seeing a huge lack of access, seeing worker turnover. And it’s really critical right now, especially as the federal government moves to cut a lot of funding to states, particularly New York, where we’re seeing actions around Medicaid and investigations around Medicaid fraud and the possibility that we have Medicaid funding cut. Again, it’s critical that the state take this time now in this year’s budget to really prop up our service industry, particularly the nonprofits who rely so heavily on state and federal funding to ensure that the backbone of services is maintained as we go through what could be a very difficult time because of the federal cuts.
Emyle Watkins:
It’s interesting that you mention managed care because I know that also home care services are asking to be removed from that system. Could you just briefly talk about what Medicaid managed care is? And is it time for the state to reevaluate if the managed care system and having managed care organizations at all make sense?
Luke Sikinyi:
Yeah. So essentially what happens with the managed care system is about 10 years ago or a little over 10 years ago, and many states have done this where the Medicaid program in most states is fee-for-service. So you provide a service, you get a specific fee and the state pays directly. The goal of managed care was to really have these insurance companies manage the dollars for Medicaid and the services and connection to services similar to your typical private insurance. But the goal was to save some of the funding by really organizing care based off of people’s needs and really supporting with that care management long-term. So really looking at the value-based services and providing those kind of services so that we can get some cost savings. And the goal was that if we could save money from the state, the managed care organizations would get paid, but also our Medicaid program would be able to reduce costs while providing effective services for folks.
And what we’ve seen instead has been that the managed care organizations have made money, but we have seen that really at the expense of people getting the services that they need and the providers receiving the funds that they need in order to provide those services. So what we’re calling for is essentially going back to a fee-for-service program so that we can ensure everyone gets the services that they need and that people are paid for those services, which will greatly help and reduce the sort of burden on both agencies and increase access for individuals.
Emyle Watkins:
Thank you so much, Luke. I really appreciate you taking the time today.
Luke Sikinyi:
Of course. Yeah. And it’s always great talking to you.