Guest:  Kara Bieniak

Topic:  Taking Control Consumer Directed Personal Assistance Services

Duration:  24:44

Published:  July 18, 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 will 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 Kara Bieniak, Customer Service Coordinator and Team Leader of Taking Control Consumer Directed Personal Assistance Services (CDPAS) of WNYIL. We are your hosts, Jillian Moss Smith and Ernest Churchwell. Welcome to the program, Kara.

Guest: Thank you both for having me, wonderful opportunity.

Host:  It's our pleasure. Historically, having certain disabilities meant that individuals would not be able to care for themselves. And at the time it was assumed to be candidates for long-term care facilities such as nursing homes, what are some examples of those impairments?

Guest:  Some examples of those impairments would be mobility in the elderly, polio, epilepsy, dementia, and mental deficiencies.

Host:  In some cases, just limited limb use, to make it difficult for people to manipulate things around the home might be reason for assessments of that sort.

Guest:  Absolutely.

Host:  So presuming that most people would prefer to have the freedom of living in the situation of their choice, such as their own homes or apartments, what sort of daily living tasks would they need someone to perform if they cannot?

Guest:  Examples of those would be cooking, light housekeeping, shopping, personal care, in some cases too companionship, especially for mental health, and being able to give them access or help them have mobility and outside of their home.

Host:  Several decades ago, it was expected that relatives, particularly children of the individuals would take in those who could no longer shift for themselves and become their caregivers. But society has become more mobile and spread out, and families tend to have a smaller number of children in the days that when many were lost to disease and industrial or farming accidents and more were thought to be needed, just in case. Who has been filling this care shortfall?

Guest:  That's a good question, unrelated personal assistance, as well as neighbors, friends of friends, people within the community and people within their church as well, would be a good example of people who could help outside of the family.

Host:  So, unless the consumer is very well off, the cost of employing an aide many hours per week would be very taxing on our household’s finances. How can insurance companies and government agencies try to fill this gap?

Guest:  They'd have long term care insurance or Medicaid. They get assessed by their MCO which is their insurance provider, and from that aspect they determine what type of care that they're going to need and up to how many hours or per month or per week.

Host:  When Medicaid begin underwriting home care were the actual arrangements on the day to day basis carried out by local entities?

Guest:  Yes, the county Social Services department, and the other nursing agencies were tasked with making the arrangements.

Host:  Under this model how much say did the consumers have in how the county social services department, the contracted nursing organization, and the home care aide would set up their plan?

Guest:  They had very little say in, this is what we call the traditional care where all the planning was done without the consumers input, so they had little to no say.

Host:  A little over 20 years ago, the NY State Legislature passed a law that created a whole new paradigm for home care, what was it?

Guest:  This is called the CDPAS Program which is long term Consumer Directed Personal Assistant Program, also known as Taking Control.

Host:  So, under the CDPAS, what additional capabilities does the person being served have for the first time?

Guest:  In this program, they are able to hire who they think would do the best at meeting their needs. They schedule when they want their care to be given during the day, overnight, what days a week. The discipline and evaluation and, unfortunately, could be possibly the termination when necessary of an employee.

Host:  Well, it sounds like the consumer has an awful lot of authority over their home care attendant for the first time. So, the question comes to mind, why does Medicaid still need a supervising agency called a fiscal intermediary?

Guest:  That's a good question, it's the responsibility of the fiscal intermediary to do the orientations of the PAs, personal assistants, and to keep track of the time worked, and to process payroll. Keeping personal assistants compliant with the program's guidelines is also something we're responsible for as well.

Host:  And I think they even do a bit of prescreening of applicants for criminal records and whatnot as well don't they?

Guest:  Yes, we do screening for Medicaid fraud, so there are individuals that will not be able to participate in the program have they had that sort of background and then anything beyond that would be something of the consumers choice.

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 Kara Bieniak, Customer Service Coordinator and Team Leader of Taking Control CDPAS of WNYIL. We’ll continue exploring the crucial role of this organization in home care.

Apparently, consumer direction means that people with disabilities decide who can best meet their needs as you referred to, and should be hired, whether or not the personal assistant or PA has formal certification or not. Are there any limitations on who this includes friends, neighbors, relatives?

Guest:  It does exclude the spouses and directing parties of the consumer. Directing parties are representatives ultimately direct representatives are those individuals who actually can make some decisions for the consumer within the program if they are not of mind, body and sound or are they under aged. Those are the individuals that would not be able to work for directly for the consumer in that manner and be paid.

Host:  But any other more distant relatives would be able to get reimbursed for the time they spend as caregivers?

Guest:  That is correct, if you have a sibling, a nephew, a grandchild, , a great niece along those lines, yes, that would be acceptable as long as they don't represent you as your DR, which is the Directing Party.

Host:  As it is acting on behalf of Medicaid and that's also for this state taxpayer, the fiscal intermediary or FI is responsible to confirm that personal assistants are actually working the hours claimed. What mechanisms permit them to do this?

Guest:  It's an efficient mechanism that we use, it's called EVV which stands for Electronic Visit Verification, which is conducted through the use of the consumers’ home phone, where the PA personal assistant would call in and out from the residency.

Host:  All right. Well, as long as the taxpayer that pays in towards Medicaid is getting their money's worth, as it were. For several years under the umbrella term Taking Control, WNYIL has functioned as the FI for CDPAS programs in 14 counties across the state with local partners Centers for Independent Living. Without naming those counties what regions do this include?

Guest:  Sure, that would be Erie, Niagara, the southern tier, and the Northern New York State.

Host:  And wouldn't that also include the Finger Lakes counties like Monroe, Genesee, Orleans and Wyoming?

Guest:  Absolutely, it would.

Host:  Don't want to leave those guys out, they might get their feelings hurt.

Guest:  Not at all (laughter).

Host:  A year or so ago, New York State Department of Health determined to hold a competition to consolidate the 500 some fiscal intermediary organizations, and how many survived the process?

Guest:  Well, there were 68 FIs that survived the process and our agency is grateful to be one of those 68.

Host:  Boy, that's a pretty severe winnowing I dare say. Well in any case, we are pleased that WNYIL was one of the survivors and is authorized to have a nonexclusive right to serve as an FI in additional counties all over the state. I say nonexclusive because we have to compete with other organizations like Venture Forth, and even some other Centers for Independent Living, who also have the legal right to serve as FIs. How many counties does WNYL serve now?

Guest:  So far there's a total of 36 and possibly counting.

Host:  Oh, we could stack up a few more after review and whatnot in the future.

Guest:  Sure, why not. All are welcome.

Host:  How will this considerable expansion increase the work on Taking Control staff in Western New York?

Guest:  It will impact the staff, and we're preparing and implementing processes to serve the additional counties, so far, like I had mentioned 36 in total.

Host:  Well, for years now, grassroots advocates have been pressing the state to increase the wages paid to personal assistants, which has been at or near $12.50 per hour. Well, except in New York City and adjacent counties which have a much higher cost of living. Then on this July 1 workers and fast food restaurants around the state began receiving a $15 per hour minimum wage, bringing it up to the rate that the Big Apple has had for over two years. Although this greatly cheered a lot of fast food workers, I'm sure, didn't this deleteriously affect the ability to recruit CDPAS personal assistants?

Guest:  It most certainly has; it has impacted a number of people left willing to do the home care for the $2.50 less than what the local fast food is paying. So absolutely, it has impacted and not obviously in a good way. There's a lot of elderly and loved ones left out there, because obviously the cost of living has gone up extremely so it's definitely something that we wish to see move for, be higher in pay for those willing to do that home care.

Host:  Many businesses that are reopening after COVID-19 pandemic restrictions were lifted, are having difficulty attracting replacement workers and are having to increase wages and/or benefits as incentives. Does this additionally complicate hiring PAs?

Guest:  This is creating difficulty in the number of available people willing to work in the home for sure. Even though our agency has an attractive benefit packages, people are looking for the dollar amount in the hourly increase for sure.

Host:  Well, I'm sure that in the amount of time that we've spent we've just barely touched on a lot of things that CDPAS does for consumers. One thing that comes to mind, would you say that individuals with this degree of control, have more self-respect and assurance than they would under the traditional system? And also, are there additional aspects of assistance that Taking Control offers that you could share with our audience?

Guest:  We definitely think that this impacts their confidence and their ability to thrive outside of the community, and we advocate for people, all people with disabilities should they need assistance.

Host:  Are there particular aspects in the way that the program works, that people might find enlightening, things that were really quite a far distance from the way things used to be. For instance, was there a much greater danger of people winding up in nursing homes as that was thought to be the default situation. And is there a great danger of that happening, if not sufficient, personal assistance can be recruited to serve those in need.

Guest:  I think that that is a huge possibility that could be happening more so now than ever, especially during this COVID-19 19 outbreak. It's important for people to also know that if they are in a nursing home and want to think about any type of other traditional care or be back in their home for those reasons they can always reach out to their MCO to advocate for this program for themselves so they can be back in their home and being taken care of by loved ones. Sometimes, people only need a short stay into rehab facilities or nursing care homes after some sort of procedure or surgery but can return home. Many of them don't feel like they can or are able to but that is definitely an option for them, you know, if they're willing and able.

Host:  Chris, one of the advantages of CDPAS Taking Control that is being connected with WNYIL is we have entire staffs of people, many of whom function to help people live more independently in the community outside of institutions. For instance, NY Connects can help elderly people with that sort of need. What are some of the other types of staffers that might provide assistance?

Guest:  Well, we have the MAAP program and that helps individuals fill out applications for Medicaid assistance, and other health insurance benefits. We also have Peer 2 Peer, we also have…

Host:  Well, I mean it's nice to have an agency with so many aspects that you need to get out the manual to find the many avenues of assistance there are but I just wondering if there were some things that immediately came to the top of your mind?

Guest:  Um, yeah, we definitely have a list, we also have transportation, as well for those of our consumers who are not able to have their own vehicles or aren’t mobile. In that case, and our website does is very informative and has list of other programs, services and groups within our family of agencies that they can go to, as well for more information.

Host:  And speaking of independence Express van transportation, there are an awful lot of organizations already existing that have transportation primarily for medical appointments, doctor visits, hospitalization and routine treatments. But are we almost unique in having what they call a non-priority service in that your visit to the mall or visit Uncle Fred does not get bumped because someone else needs to go to the clinic?

Guest:  Absolutely. We also offer groceries delivered during COVID-19, most especially, we are offered and serviced. Many consumers who were in need of groceries, whether they came from the food pantry or their own orders, that way they would be delivered efficiently and effectively to those in need of food and water.

Host:  So, we were really quite the lifeline for people who the travel restrictions, confined them to their homes, and they still needed to get the basic necessities of life. And plus, I'm sure that the drivers would be more than happy to deliver the paperwork that they need to sign up for these additional programs, and we should probably mention for most of the agency's programs. A doctor's referral is not necessary unless they enroll in particular programs that have as a requirement of the funding that people be certified as having certain disabilities.

Guest:  That is correct, they definitely contact our agency and the intake department and we can definitely assign them an individual to help them to see what needs can be met by our agency and the different programs that we provide. Absolutely. And to add to the transportation during COVID-19, especially, we also provided consumers and their personal assistants with medical supplies such as masks, gloves and hand sanitizers for quite some time during the time that we were actually shut down as a city as a county as a world. So those in need who were not mobile or didn't have family or friends nearby to provide them with the masks and hand sanitizer centers that we need on WNYIL was definitely there by their side.

Host:  So, we became the primary source for personal protective equipment for consumers, for their care aides, and I guess consumers of our programs in general.

Guest:  Absolutely we did to all counties.

Host:  You've mentioned many aspects of services connected with home care, but WNYIL offers a wide range of services that can help a person with a disability, achieve a more independent life in general, can you mention some of those for us?

Guest:  Absolutely. I'd like to touch on the Health Homes coordination, which is health and care navigation. This program offers assistance to intend to help consumers attend important doctor's appointments, and also provides support through independent living skills, obtaining health insurance and integrating an approach to health information for the consumers here at WNYIL. I also definitely would want to mention the Independent Consumer Advocacy Network program, also known as ICAN. It provides free confidential help to consumers for enrolled healthcare recovery plans, also known as HRPS. We also have a Renewal Center for those experiencing mental health crises, a place to feel safe, other than the emergency room or hospitalization and allowing them to decompress with peers amongst themselves. Addicts 2 Addicts and peer family support. This program is peer led, and the team is serving those, it helps serving those with substance disorders and also their families as well. And as I mentioned before, transportation, I think that we are very unique in that way WNYIL, and I'm actually very proud to be working for an agency that offers so many different possibilities for those to advocate for themselves in the community,

Host:  I guess, does that pretty much exhaust the services that come to the top of your mind, without having to page through the literature?

Guest:  Yes, I believe so.

Host:  So, some listeners are bound to have questions on areas that we haven't covered, can they learn more from the WNYIL website and what is the phone number of the main office in Buffalo?

Guest:  Absolutely they most definitely can go ahead and get to our WNYIL website as well, and the phone numbers that we have, several phone numbers actually especially customer service I have for direct lines that come to me. Obviously, our Erie County phone number is 716-836-0822. You can press option 5 for the direct customer service team or my direct extension at 194. You can also call the 1-800 number, which is 1-800-348-8399 again with option 5, as well as 716-836-0105. And again, option 5 for customer service. If you have any CDPAS, Taking Control questions and or WNYIL in general.

Host:  One of my favorite places to go is www.wnyil.org because that is your portal to over a dozen different types of services, departments and other things at the agency that people can take advantage of. So, hey, if you've got any questions, just give it a try and see what they find.

Guest:  Absolutely. There's actually a section on the website that they can directly go to that where they can ask the questions that they need if they have to get to a certain department and they're not sure of who the representatives that they need to talk to, or the extension of that individual as well.

Host:  Well that really sounds like the ideal resource for individuals that want to find what they need to take control of their own lives in all aspects, as compared to traditional agencies, many of which seemed to have this attitude of, we're professionals we know how you should live your life. Whereas, independent living says, hey, you know yourself better than anybody, you can make decisions, you just need the right resources and information, and you can forge on ahead and we are more than willing to show you just how you can take advantage of that. Kara, thanks so much for taking the time to be our guest and explore your program today.

Guest:  Thank you. I appreciate the time and I hope you all, stay safe.

Host:   Thanks so much.

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 Kara Bieniak, Customer Service Coordinator and Team Leader of Taking Control CDPAS of WNYIL.

This program features the song A Little Ditty on the Dance Floor by Jay Lang available under Creative Commons Attribution noncommercial license.

We've been your hosts,  Jillian Moss Smith and Ernest 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.