Guest: Andrea Foote, Individual and Family Engagement Coordinator
Topic: Prime Care Coordination
Published: September 19, 2021
Host: Welcome to Independent Perspective In-Depth, a program presented in the public interest by the 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 are delighted to have as our guest for today, Andrea Foote, Individual and Family Engagement Coordinator with Prime Care Coordination. We are your hosts, Jillian Moss Smith and Ernest Churchwell. Welcome to the program, Andrea.
Guest: Thank you so much for having me today.
Host: Well, I gather that Prime Care Coordination or PCC serves thousands of people across the Empire State, chances are that many of our listeners are not familiar with your organization, in part for reasons we'll explore later. As it would give us a place to start, could you please read us your mission statement?
Guest: Sure. So, our mission at Prime Care Coordination is to partner with people with intellectual and/or developmental disabilities, to receive the services and supports that they need to live their lives in the most meaningful way possible. And our vision is to have those same people to thrive in the communities of their choice where they want to live, grow and learn.
Host: Awesome, thank you. And even though organizations such as PCC take pains to refer to intellectual and developmental disabilities to stress the distinction, we at Centers for Independent Living suspect that when many people hear developmental disabilities, they still assume it is a politically correct euphemism for intellectual disabilities, which has taken the place of the abandoned pejorative term mental retardation, which is the real definition of developmental disability.
Guest: So, a developmental disability is a group of conditions that's caused an impairment in a person's physical, learning, language or behavioral areas in their lives. These conditions usually begin during the developmental period, and that's consider birth to 22 years old. Per New York State developmental period per New York State, the mental hygiene law, to be eligible for services through OPWDD, which is the Office for People With Developmental Disabilities, you must meet a specific diagnoses requirements. The New York State OPWDD, which is where you usually hear that acronym come in, they are responsible for coordinating services for New Yorkers with developmental disabilities, or intellectual disabilities and those other specified diagnoses.
When it comes to those diagnoses, they have to be considered to impact day to day functioning or cause a substantial handicap to a person's ability to function within society. So, one of the biggest examples that I tend to give here is a person let's say with autism. So, a person with autism may be extremely intelligent, and they may have a very high IQ. However, they may have some concerns or struggles in social situations and interactions. So, this would affect their ability to function within society. So even though somebody may have a higher IQ, they may be, you know, having issues or concerns in those other areas. The other piece to this is that the disability has to be expected to occur indefinitely or permanently throughout the person's life.
Host: Alright, well as our listeners are beginning to suspect, Developmental Disabilities does include a broad range of different types of disabilities. And I've heard that one in six children can be diagnosed with one. Could you mention some additional ones that fall under this umbrella?
Guest: Sure. So, some of the diagnoses listed under that OPDD eligibility are intellectual developmental disabilities, autism, cerebral palsy, epilepsy, Prader-Willi, familial dysautonomia, or neurological impairment. And so, to give a little bit of a better understanding, I kind of want to talk about each one of them individually just so that people can kind of understand what those disabilities might be or look like.
So, an intellectual or developmental disability, it's a disability that's characterized by a significant limitation in both a person's intellectual functioning and in their adaptive behavior, which covers many everyday social and practical skills that a person might have.
Autism or ASD, Autism Spectrum Disorder is a complex developmental condition that includes persistent challenges in those social interactions, which I kind of talked about earlier. And it also sometimes can touch on people's speech or they may be a nonverbal communicator. People sometimes tend to have repetitive behaviors. And then people may also have tactile issue issues or concerns, where they may not like to have physical contact or be touched by other people.
Cerebral palsy is a condition that's marked by impairments to muscle coordination. Sometimes you'll hear this called spastic paralysis. It can also have other disabilities. Typically, this disability is caused by damage to the brain, usually around birth.
Epilepsy is a neurological disorder marked by a sudden recurrent episode of sensory disturbances, or a loss of consciousness or convulsions. It's associated with abnormal electricity activity in the brain.
And then there's also Prader-Willi. While this syndrome is technically a rare genetic disorder, it results in a number of physical and mental behavior problems, one of the key things to Prader-Willi that you'll tend to see as a consistent sense of hunger. And usually, you'll start to see the onset of Prader-Willi around the age of two, and that really causes people to overeat or drink or those sorts of things.
Host: Some traditional disability rehabilitation organizations tend to have standardized tracks that all their consumers are compelled to follow. We gather that PCC takes a time to get to know each individual, do you think that makes a big difference?
Guest: Yes, I absolutely believe that makes a world of difference. By getting to know the person, their needs and their wants, we can truly tailor the services and support that they need around them to make that person as successful as possible. This is different, of course, for every person, depending on where they are in their life, you know what their goals are, and really seeking out what's truly important to that person.
Host: All right, we understand that PCC helps develop a formal life plan for each consumer, who all has input into that?
Guest: So of course, the person is always at the forefront of their life plan. The life plan is a comprehensive guide that is developed through a person centered planning process directed by the person, and the people that they choose. Those people that they choose are called their care team. That's what we call them at PCC.
On the care team can exist many different people; that could be their care manager, their family, their caregiver, and advocates or any of the service providers that that person utilizes. So some examples of that might be, if somebody goes to day habilitation, they may have a staff member that works with them, they're at the meeting, or if a person maybe lives in a group home, or even a community based apartment, maybe one of their staff might attend that, job coach, maybe medical staff with the person has a nurse or a doctor or a care provider that wants to be part of that. Or if a person utilizes self-direction services, they may have somebody like their fiscal intermediary, or their broker there at the meeting as well to discuss their budget or different things that are going on. So, there's many different people that can be at that meeting. However, the person chooses who they want at that meeting to discuss those things. And then the services that are within that life plan can include a whole bunch of different supports, but definitely things like health, wellness, behavioral health, as well as any family services. And you know, we really look at the person holistically. We don't just look at the person's disabilities, we look at the person's whole life because that really affects who they are, what they're doing, and how they're going about their life.
Host: Independent Living centers have as a basic tenet, that the individual's desires are paramount. What role does the individual's care manager play?
Guest: So that care manager is really, their role is to work with the individual and their family, to build a relationship and learn what the wants and needs of that person are as they're living, learning and growing. Then they can directly connect them to services that they need to meet those ever changing needs. As we know, life is always on the move, people are changing, and so are their goals, so our goals right now just even for ourselves are different than they were 10 years ago, 15 years ago. It's the same with the people that we support. When you're going through different maybe age stages or life stages, your goals change. Right now, you might be perfectly healthy and everything's going great. And then suddenly, your trip, fall and break your leg. And now your goal isn't one thing, it's now let me get healthy, right. So those things change and move and grow with the person and that care manager is there to keep in contact with the person, their family, know what's going on with them. And then as things change and morph in their life, keep that Lifeline that we talked about up to date, keeping the services that that person needs up to date to make sure that they are getting everything that they need in that moment in time.
Host: Your materials stress that diversity is a PCC priority. Are some care managers able to serve consumers whose primary language is not English?
Guest: Yes, we have several bilingual care managers, and enrollment coordinators, we have Spanish speaking coordinators. We also have care managers that use sign language to communicate. We ensure that materials are given out to the person and their family in their primary language. Our goal is always to make sure that the person and their family is knowledgeable and understands the process, whether that's the enrollment process itself, or whether that's the process of the life plan meeting, and the documents that go along with all of those different services, and we want to make sure that the person is comfortable. And if for some reason we don't have a care manager that speaks the person's language, we can always bring in an interpreter, and we can always find a way to get those materials in their primary language.
Host: If you've just joined our program, you're listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL. Our guest is Andrea Foote, Individual and Family Engagement Coordinator with PCC. We'll continue exploring the impressive work of the statewide organization. As we have said PCC stresses diversity and maintaining a family like environment and we gather that your staff includes individuals to whom consumers from a variety of backgrounds can relate. Could you mention some of the racial, ethnic or other groups from which these staff members come?
Guest: Absolutely. So, we have enrollment coordinators and care managers from many diverse backgrounds, including people of African American and Asian descent, people from Puerto Rico, Bermuda, the islands, we have people from different religious as well as cultural backgrounds. We have staff that are part of the LGBTQIA community, as well as the deaf community. We want the environment that we work in and we live in and we play in to feel as comfortable and inclusive as possible for everyone.
Host: To help deal with the Covid-19 pandemic back in the spring, the NYS OPWDD announced that certain services were available for pre-approved families with children who had in-person schooling. Now that school is resuming what can families expect and just who is eligible?
Guest: Families can expect a slow move back to traditional service delivery service model, prior to COVID, with a few more options to move towards those more community based services.
Host: Awesome. And as we hinted earlier, while PCC has a strong presence in Rochester, the southern tier and other areas of the Empire State. It is just in the process of creating a stronger presence in Western New York, and has advertised for some job openings here. What steps are presently being taken?
Guest: So yes, as a provider of care management services, we strive to provide Person Centered experience from the first contact with a person, whether it's a family, or even a potential employee. We have actually been in the Western New York Region since about 2018 when we opened, but we're currently looking for additional care managers in Western New York Region to assist us with our mission. As the number of people that we support grows in Western New York, we need to look to expand the employee base to meet that need to make sure that we have enough care managers to support all the people that need our services.
Host: We understand that PCC has individual and family advisory boards for each region that meet three or four or more times per year to provide feedback and suggestions for its services, and that consumers and their relatives are occasionally recruited to participate. What can you tell us about these?
Guest: Yes, so I actually run our individual and family advisory boards. That's why my title is so very long.
Our IFAB boards as we call it, IFAB for short, instead of Individual Family Advisory Boards are made up of people that we support along with their family members or caregivers. These boards play a key role with assisting us to create policies, services, and communication with our families in a level of service that is really person centered and person directed. Our boards help us to get feedback from the people that we support and their families directly. And we are always striving to be the best that we can be while providing quality services. They have worked on several quality projects with us involving PCC and I just love meeting with the families and individuals, they give us so much great feedback all the time. So, it's wonderful. Yeah, we usually try and meet at minimum four times a year. But you know, we try and get multiple meetings in whenever we can, or if there's things going on with the state, new things coming out, we try to make sure that we're communicating whatever is out there that's going on to make sure that everyone's informed.
Host: Awesome, and PCC is accepting applications from organizations to join their service provider network. What would determine if a particular entity would be a good fit?
Guest: So, the agency or organization would need to provide a service that would be considered of value for a person with an intellectual or developmental disability. This could range from advocacies to support to direct services. We've had multiple companies come on, our network partners, we've had people from a state planning for special needs, trusts, financial services, whether that be like rep payee, or different sorts of things like that, new social day programs, or traditional day programs, aging services, even like the Alzheimer's Association, people that work with durable medical equipment, or even different therapies, music therapy, art therapy, all those different kinds of things. So, anything out there that you think that would be beneficial to a person with an intellectual or developmental disability, they can connect with us because we would love to have them be part of our network. Because that network partner, they are on a directory that our care managers can look up any of those services so that we'll know exactly what services are in what area and who can help the people that we support.
Host: Very good. Earlier this year, PCC and some of its partners, were concerned that NYS was hinting it was going to cut funding for intellectual disability and developmental disability services by 23%. What was their response and the ultimate outcome?
Guest: So luckily, for the people that we support, this action did not happen. There were quite a lot of people that were very anxious about these cuts, because they were, I mean, 23% is a very, very severe cut to be had, that would have really affected people. So there were many calls, emails and letters, sending advocacy for care management to legislators within New York State, and additional federal stimulus money helped to remove those cuts for this year, luckily, but as we know, it remains critical that our services remain funded for those that we support many, many of those people who live at home, in their communities and depend on us to really help them with those services.
Host: Besides care management, what are some other services of PCC such as transitional care and health information technology?
Guest: Yes, so at Prime Care, we have a clinical team in each region. So we have different regions, which I'll talk a little bit about later on. But um, so we have five different regions. And the clinical team is comprised of a registered nurse and a licensed medical social worker, and their title is considered a behavioral specialist. So the registered nurse or the licensed master social worker work in conjunction with the care manager, so not in place of them but with them together. And depending on the person's needs, so the RN would collaborate together with the person and their care manager regarding any medical concerns a person may have to give them their insight and kind of expertise in those areas where maybe a care manager might not have all of that information, a nursing person would.
Our licensed master social worker can help assist with any behavioral challenges or concerns a person may be having. And sometimes that may consist of somebody that's currently going through a crisis. Because sometimes everything's going great, and then something happens. And maybe you can’t immediately get into behavioral services or therapies or whatever, but we can help try and get those services in place as quickly as possible. We also have a Student and Family Education Specialist. And she works actually across all of our counties within NYS, and we are in 39 different counties. Her name is Libby Bentley, and she has a special education background. So, she is an education advocate. So, it is a free add-on or rest for anyone that's enrolled in PCC. She also works in conjunction with the care manager, kind of like the registered nurse and the licensed master social worker, she can help advocate at CPSE, or Committee on Preschool Special Education or CSE, Committee for Special Education, or transitional meetings for children that are aging out of the school system. And that's a lot of children either age out at 18, or 21. So she can help plan for that transition out and into the adult world. And we found that this is one of the services that our families really wanted and needed, because a lot of times when people are first coming into our services, it tends to be a lot of school aged children where they start to see that there's some deficits going on and things like that. So, this service is really helpful to just help explain that special education process to family members, help them advocate and know what their rights are, and things like that. So, our family members really have utilized the service quite a bit.
Host: Well, it sounds as though you really do cover the gamut of services. But knowing us, I'm sure that there are some areas of PCC that we didn't think to ask you about. What else do you think is important for our listeners to know about what you do?
Guest: Yes, so as I alluded to a little bit earlier, Prime Care serves nearly 8,000 consumers and 39 different counties within New York State. So, we go all the way from Niagara, Erie, Chautauqua all the way over, across to Broome and up into what we call the Mohawk Valley / Adirondack area. So, we are quite a large footprint and due to that we really try to take a regional approach, because we know that different regions have different cultures, services, weather patterns, you know, you're in western New York, you understand a couple years ago, we had 10 feet of snow.
You need to know what's going on in the areas that you're in. So really the exciting part about that is our care managers are in those areas that the people live in, so if let's say you're in Erie County, you're going to have somebody that lives in that same area. And I joke about the 10 feet of snow thing because if somebody was living down in Broome County, and they were your care manager, they wouldn't know what the heck was going on in Buffalo, right? We need to know what's going on, you know, go Buffalo Bills.
So, the other piece to that is our program is a Medicaid funded program. So, people do you have to be Medicaid eligible. And our enrollment coordinators can help people apply for both that OPWDD eligibility, and also Medicaid. So, when it comes to that, OPWDD eligibility, that can be quite a cumbersome process for somebody to do on their own. Our enrollment team is very skilled at making sure that the packet that has to go to OPWDD is filled out completely and accurately, any of the assessments that need to be within that packet are there. Because a lot of times when people are trying to access these services, it tends to be crisis time, it's like, okay, we need to get the services, and we need to get them now. And that's why I say our enrollment team is so great, they're out there working with families every step of the way. And that's something that I really pride our team on is that really taking the time to care.
Host: Awesome. So now after hearing all of that information about everything that you guys provide, how would an individual or a family seek services from PCC?
Guest: Yes, so they can contact us at our 1844 number. So that number is 1-844-347-3168 and then they would press option one. And that would get them connected with our intake and enrollment team. They can, like I said, they can answer any questions that somebody might have about eligibility and enrollment into our program. And if they want to, they can also check us out at our website at www.primecareny.org and they can click around and look at things if they're a little nervous and hesitant to call the number I know, sometimes people are, they can look around and see what we're about, they can check out the website, they can also check us out on Facebook, and also liked on LinkedIn or on all the little social medias, so they can check us out there as well.
Host: It's amazing to think that less than a dozen years ago, the precursor agency, iCircle was trying to get licensing to do these sorts of functions in NYS and now you're in 39 counties, have over 31 or so partners, and serve 1,000s of people, my hat is definitely off to you. Is there any other avenue that you haven't already mentioned, for people that wish to have more information about PCC?
Guest: I really would say just our website will really give you a well-rounded view of what we are, what we do. And if you want to check out the different events that we go to and things that we participate in. Like I said, social media, I tend to go to a lot of different events. That's another piece of my job, I'll go to tabling events, schooling events, things like that. So, if you wanted to come out to any of those events, and meet me in person, you totally could we can have a chat.
Host: Awesome. Andrea, thank you so much for taking the time to be our guest and explain your programs.
Guest: Yes, and if any of the organizations or agencies wanted to connect with me directly to become part of our network partners, they can connect with me via email if they would like to, and my email is firstname.lastname@example.org
Host: Awesome. Thank you so much. We appreciate you being here with us.
Guest: Oh my gosh, it was so much fun. Thank you for having me.
Host: You've been listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL family of agencies, courtesy of the NFRRS. Our guest was Andrea Foote, Individual and Family Engagement Coordinator with Prime Care Coordination.
This program features the song A Little Ditty on the Dance Floor by Jay Lang available under a Creative Commons Attribution noncommercial license.
We've been your hosts Jillian Moss Smith and Earnest Churchwell. If you wish to hear this program again a couple 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. Have a good week and be safe.