Guest: Alan Venesky, Community Relations Manager
Topic: Person Centered Services (PCS)
Published: October 10, 2021
Host: Welcome to Independent Perspective In-Depth, a program presented in the public interest by Western New York Independent Living (WNYIL) family of agencies, courtesy of the Niagara Frontier Radio Reading Service (NFRRS). Using this long format, we'll be exploring the broader issues affecting the community of people with disabilities in discussions with knowledgeable individuals from a variety of organizations and backgrounds. We're delighted to have as our guest today, Alan Venesky, Community Relations Manager with Person Centered Services (PCS). I'm your host Ernie Churchwell. Welcome to the program Alan.
Guest: Good morning, thank you so much for having me.
Host: It's our pleasure. Those of us to have been involved in rehabilitation for people with disabilities are long familiar with the phrase person centered services to describe a particular philosophy of involving the consumers in all decisions affecting them. But yours is the first time I can recall it being an actual organization's name. What's the significance of that?
Guest: So, PCS is a philosophy but it's also who we are and pertains to the service that we provide. So, our Care Coordinators customize what’s called a Life Plan, and that's an electronic document that houses a person's narrative, supports a person’s goals and services as well. It promotes informed choices and independent decision making. So, our focus is on putting people first.
Host: Terrific. Are there particular subgroups of the disability community that PCS is designed to serve?
Guest: Sure, yes so, we provide care coordination, comprehensive care coordination services, for people with intellectual or developmental disabilities. So, people have to qualify for eligibility under New York State’s (NYS) Office for People with Developmental Disabilities, often referred to as OPWDD. We help people obtain that eligibility, we have a large intake department, but they must meet that qualifying criteria, which includes a qualifying condition under NYS Mental Hygiene Law. They also have to prove that the condition occurred before their 22nd birthday, its not likely to go away, and it causes delays in self help or independent living skills.
Host: I’m just curious, I noticed that you specified intellectual disability (ID) as being separate from developmental disabilities (DD). Is this to help avoid the traditional confusion of laymen who tended to think that DD was just a more polite term for ID and a much more politically correct term than the rather offensive mental retardation?
Guest: Sure, good question. So, we're keeping up with the times, we’re putting people first. Mental Retardation is actually still the terminology as far as I know that's built into NYS Mental Hygiene Law. So, their documentation and assessments that they use still refer to people with an IQ of 60 or below as mentally retarded. Also, Down syndrome falls into that category as well. The times have changed, obviously mental retardation is an offensive way to associate an intellectual delay with a person. So intellectual disability is a developmental disability if it occurred before a person’s 22nd birthday. It can also encompass a traumatic brain injury. And it refers to an IQ under 60 of processing or global delays in cognitive ability.
Host: These things happen in radio, what can you do. People have an unfortunate tendency to make negative terms out of things that were originally just technical descriptors, you probably know that at one time, imbecile and moron were not insults they were simply ways of describing certain ranges of IQ. In any case there are probably many listening who are not aware that there are actually dozens of disorders that fall under the umbrella of developmental disability. Could you list the major groups?
Guest: Sure. So besides intellectual disability, cerebral palsy, epilepsy or seizure disorders, neurological impairment, there are over 3000 qualifying neurological impairments that could qualify somebody for OPWDD eligibility. Autism spectrum disorder, which is also a neurological impairment, familial dysautonomia, which is a genetic disorder that can cause intellectual delays. Prader-Willi syndrome is also listed on the mental hygiene law for OPWDD as well.
Host: And those are just the high points, we appreciate that. But the key question what is the function of PCS in helping these consumers improve their lives? If your vision or mission statement nicely wraps up the concept in a few sentences, feel free to mention them.
Guest: Great, so our mission is to connect people to the care, support and opportunity that maximizes their quality of life. PCS provides comprehensive care coordination, as I mentioned under NYS Department of Health (DOH) and NYS OPWDD. We provide a service where a Care Coordinator is responsible for creating and maintaining the Life Plan, as I mentioned earlier it's an electronic document that houses a person's narrative, their needs, their authorizations and their circle of supports, as well as their providers, and they help families navigate a very complex and difficult system of supports in NYS to ensure that the person is able to access the supports and services they need to live their best life as independently as possible in our community.
Host: It is my understanding that PCS is actually a collaboration of 27 separate partner agencies that are considered its owners. Without listing every ARC within 200 miles, could you mention a smattering of the partners?
Guest: Absolutely. So, we are 100% owned by voluntary provider agencies as you saw on our website, which means that we are lead by a board of directors from long standing, the most trusted, oldest names in providing developmental disability services within our community. We have several boards that are led by CEOs of these organizations locally here in our 18-county region that include People Inc., Empower, Community Services for Everyone, including all of the ARCs in our service region as well. And many more.
Host: That really does seem to include a lot of different voices under one roof so to speak. How does such a varied organization function?
Guest: We function under terrific leadership from our CEO Bridget Bartolone, and our Care Coordination leadership team as well. We are a collaborative and inclusive organization that includes voices from not only providers and our care coordinators as well, but also our family members. We are also are comprised of a family, individual and care giver advisory board that provides input and direct feedback to our leadership team and helps guide our mission. Our values at PCS are people, integrity and trust. And so, under strategic leadership we are a mission focused organization that puts people first and wants to help people them to maximize their quality of life.
Host: As someone from a Center for Independent Living all that consumer and family input warms the cockles of heart. I bet this all covers quite a few counties. How many are there and what is your service area in general?
Guest: NYS OPWDD is made up of several regions. PCS provides support in region one, so that encompasses 18 of the western most counties in WNY including the Southern tier, Finger Lakes, and that’s from roughly west of Syracuse on over to the edge of the state, north to south.
Host: Not too shabby of a coverage area. This type of involved organization doesn't spring up overnight, how long has PCS existed?
Guest: Our system transitioned to comprehensive care coordination from what was formerly Medicaid Service Coordination in 2018, I believe. Bridget Bartolone was the first employee of PCS and was hired on sometime around 2013. As the first employee many of the provider agencies who own and operate PCS helped build the foundation and building blocks of what was to launch as PCS care coordination in July, on July 1, 2018. So it was a work in progress, it was designed by the state to make this transition over many, many years in advance, and we were created under the Affordable Care Act, the model of comprehensive care coordination and that applied to NYS Office of Mental Health, and finally made its way to OPWDD in 2018. So, it's a long time running and then the official launch was 2018. So, there are seven care coordination organizations across NYS now.
Host: That's terrific. Now I know that you're probably not part of the human resources department, but in general numbers between the PCS coordinating hub and the partners about how many employees and volunteers are serving New Yorkers with disabilities?
Guest: That's a good question. I can tell you at PCS we employ roughly 800 people. We have just about over 700 Care Coordinators, within our 18 counties, providing service for 17,000 children and adults with intellectual and developmental disabilities. NYS OPWDD as a provider for people with developmental disabilities has about 130,000 people receiving services through care coordination. We are the largest provider in the Western New York (WNY) region, as I mentioned serving more than 17,000 people, and I can't tell you exactly how many employees there are through that whole service region providing support but there are many.
Host: Oh, you gave more than an adequate notion of just how impressive an outfit you got there. Speaking of what serves WNY where are the local headquarters, and I think you've given us a hint but where do your funds come from?
Guest: Right, so our headquarters is out of Buffalo, NY, our physical location is 560 Delaware Avenue in Buffalo, and our funds are 100% Medicaid.
Host: Great. I think you probably partially covered this, but are there any other criteria besides ID and DD used to determine which individuals are eligible for PCS programs?
Guest: There's not really any other eligibility criteria. The people can come to the OPWDD system and access care coordination from birth through life. So, I may have mentioned before but a developmental disability occurs before someone's 22nd birthday but it's expected to be lifelong. So the nice thing about care coordination is it's designed to help someone from birth through life, through their school age years, transition into adulthood, and as a person grows and their needs change, care coordination can be customized to change with the person. To our last question regarding our headquarters, I guess I should mention that we have, I think we have about 19 physical locations throughout our 18 county service region, our Care Coordinators do work remotely, they have worked remote long before the COVID pandemic. And it really allows people to live and work in their communities, and spend less time commuting to an office location and more time working with the people they support.
Host: Wonderful, for the benefit of anyone who's just joined our program, you're listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL. Our guest is Alan Venesky, Community Relations Manager with PCS. We'll continue exploring the impressive work of this comprehensive organization. Alan, how does PCS fit into the greater range of supports for people with disabilities available in the community?
Guest: Great question. So, PCS fits in under as a care coordination organization. So there are many care coordination organizations or health homes as they're also referred to in NYS, people can access support, as I mentioned earlier, it's a very complex system of supports that can help access people who use Medicaid, PCS fits into that because we serve a unique population of people who use Medicaid, and that is people with intellectual and developmental disabilities. There is, as I mentioned, many health home care coordination organizations under NYS Office of Mental Health, and there are many people who live in our community who have complex needs. So, it's really important that people are able to make informed decisions and access the needs that, the access the services that best fit their needs. So PCS works hand in hand very collaboratively across systems, and with partner organizations within our government, within education, within the health care provider system, and within our provider world so that we can help people to access the appropriate services to help them live as independently as possible.
Host: The thought occurs to me would you consider the term program clearinghouse to be somewhat applicable?
Guest: Program clearinghouse, I'm not familiar with.
Host: But I was just using the term clearinghouse in its most general application, that's not a specialty term, just something I thought of. In any case, you've alluded to, care coordination as being key to what you folks do. Can you describe more fully how consumers can benefit from it?
Guest: Sure. So once somebody accesses the OPWDD eligibility for an individual who's living at home with family, they can access a variety of family support services through OPWDD. A Care Coordinator can help them navigate all these services that are available to them and that could include Medicaid reimbursement or respite care, transportation services, behavioral support services. They also are going to, once they become Medicaid eligible, access the Medicaid waiver, the home and community based service waiver, which will allow them to access a variety of services that can help people, as I mentioned earlier from birth through life. So for a school aged child, the Care Coordinator can act as an advocate for the family, help them navigate the special education system for their child, and access supports outside after school hours and on weekends that will complement their special education programs. They can also help that person make a successful transition to adulthood. So, it's important to know that when a child in NYS, receiving special education services is entitled to stay in school until their 21st birthday but they don't have to. And while special education is an entitlement under IDEA, the Individuals with Disabilities Education Act, OPWDD is an is an eligibility system, it's not an entitlement system. So, it's really important that our Care Coordinators help families make informed decision, understand what the person's needs are, and what services might be available to them. Once the school bus stops coming and they make that leap into adulthood, where they're going to need help from their Care Coordinator to ensure that they have what they need, whether they are college bound, looking to seeking competitive employment. Whether the person needs pre-employment training supports or day habilitation services to work on their social skills, community safety and awareness. There are a continuum of services out there to try to meet the needs of the people we serve, and the Care Coordinator is instrumental in helping that transition to be a successful one. For adults who are out in the community, we want people to live inclusively, in participate into the community to their fullest ability. And again, as a person's needs change and they become older, they may have health care, special health care needs, or living needs, things like that the Care Coordinators can help them navigate and access.
Host: It sounds like a Care Coordinator is really a good person to have on your side. The question comes if one might be interested in the services and hasn't happened to contact somebody from PCS previously, how does one get started with the program?
Guest: So, there's a few ways that somebody can get started. They're able to contact our main phone line, which is 888-977-7030. If somebody is seeking that OPWDD eligibility and they want to get started, somebody is able to help them by contacting 855-208-3533. They can also go to our website at www. personcenteredservices.com, and they can find more information there, as well as some short videos on what care coordination is all about, and some resources to help them make the best decision moving forward.
Host: I had in my mind to ask you what supports and services, one can get from a Care Coordinator, but I suspect you've pretty much covered that already.
Guest: There are many services under OPWDD, but the whole idea of comprehensive care coordination is not putting anybody in a box. We want people to be able to access services that support complex mental health, medical or behavioral health needs as well. And so, there are many other systems that people can access to help them meet the needs that they have.
Host: My goodness, I believe you folks are probably guided by the spirit of independent living founder, Ed Roberts in having your concentration on the will of the consumer and we certainly do respect that. You've alluded to involving a Life Plan, is there anything else we should know about that?
Guest: I guess I could say that the Life Plan is created based on a few assessments, it's tailored to meet the unique individual, that's being supported. It's typically updated two times a year but can be changed if somebody has life changing events in their life that can be updated as needed. And again, it's designed to meet the person's needs and will change with them as their life and needs change as well.
Host: And you’ve mentioned a number of times the connection with the NYS OPWDD, are there any additional services from OPWDD that have not yet come up in the interview?
Guest: I guess what I could mention in terms of helping people to live their fullest life in the community, self-direction has become more popular over the past few years and that allows somebody to hire their own staff for community habilitation, independent living, even respite care can be accessed for individuals and families from childhood into adulthood. And it's a different way of receiving services that allows a person, the flexibility to as I mentioned hire their own staff, set their wage. A way that it would benefit a family is that, for example for a child who needs a babysitter or caretaking after school hours. It would allow the family to hire a neighbor, or another family member not living within their home, who may already be familiar with that child to provide those services, and a family is more likely to experience longevity with that support person as they may be a family member, or as I mentioned, know the child well. And in terms of an adult using self-direction to live in the community. There could be a benefit to them and that they can use those funds to meet their individualized needs to live independently and it looks different for everybody, but I've heard of people using self-direction for things like we've been having their driveway plowed in the wintertime or accessing therapies outside of the OPWDD system. And again, hiring their own supports to meet their needs, to live in their home.
Host: Alan, I do believe that you are a psychic because I had in mind to ask you about self-direction, but you went and covered the territory already. You obviously have a vast knowledge of all these things. And I was just wondering what primary experiences helped to prepare you for your community relations manager role?
Guest: Well I started working with children with disabilities in around 2006 or 2007 in adventure education. I finished my college experience in the desert southwest and took children with developmental disabilities on rafting trips throughout the rivers of the Southwest, along with nurses and volunteers and a ton of adaptive equipment, did that for several years, and ended up going back to school and becoming a special education teacher, where I taught in Phoenix, Arizona, self-contained Middle School. After spending a few years there, I came back to NYS and began working under the OPWDD system as a provider, and so I had the experience of working, and within OPWDD programs for children, all the way through adulthood, and recreation services, all the way up to transition pre employment and employment services, and other family support services as well. So all of that experience allowed me to prepare for this role at PCS as community relations manager, when we launched in 2018, where I was able to kind of help bridge some of that experience I had, and prior relationships to supporting getting this organization up and off the ground and making strategic partnerships within our community to really expand that prior role of the Care Coordinator into this comprehensive role where making critical partnerships is imperative to improving outcomes for the people we serve.
Host: Alan I was thinking about asking you if there are other areas of PCS that we haven't really covered but we actually don't have time to explore them. So, could you tell me, since you have 27 partners, serving people from 18 counties, if it includes the numbers and email addresses you alluded to before, that's fine also. But how is the best way to contact someone appropriate?
Guest: Great question. So you can go right to our website at www.personcenteredservices.com and under the section at the top that says about us, I think you can find our partner organizations there, and you should be able to click on their logos and that should link you to those organization’s websites. We're also a member of DDAWNY, the Developmental Disability Alliance of WNY. You can go there and find many of our partner organizations and the services that they provide as well.
Host: Alan, you have been a wealth of information and you’ve borne with my flights into fancy and I appreciate that. Thank you so much for being with us and sharing this exciting avenue for people with disabilities.
Guest: Thanks so much Ernie. Have a great one.
Host: You too. You've been listening to Independent Perspective In-Depth, a program presented in the public interest by the WNYIL family of agencies, courtesy of the NFRRS. Our guest was Alan Mineski, Community Relations Manager with PCS. This program features the song A Little Ditty on the Dance Floor by Jay Lang available under a Creative Commons Attribution noncommercial license. I've been your host Ernest Churchwell. If you wish to hear this program again a couple of days after the on air broadcast, you can find a podcast on the NFRRS web page, nfradioreading.org on the Programming tab under Bonus Programs, and also on wnyil.org under Public Relations/Podcasts and eventually under nine other well-known podcasting sites. Please, have a good week and be safe.