Achiezer SpecialCare: Mr. Marc Katz

welcome to you know a as's you know Special Care Expo and uh my presentation about what parents need to know about op WD services and there's a lot of questions you know parents of a child with special needs may have and these are the some of the frequently asked questions uh what is the developmental disability what do I need to be eligible what is Medicaid waiver what services are there what is the front door process and how long does it take to get these services and why it's so important you know for my child to be a recipient of services um just to share a story with you actually I began 17 years ago as a behavioral psychologist and um I have a passion in intake and I really want to help families you know with children with special needs and you know I really learned uh a couple years ago I actually have relatives in the fire towns and they invited my family for me over chabis and actually uh that night said oh we're having a family come over for shabis lunch and I happened to know of the family and you I didn't say anything to my family and we're sitting at the table and uh I just asked to pass you know the soda and as I as as I was asking to get the soda bottle so what's your name I said Mar cats you owe me medicated waver Services you know this is at the Shas table and I knew from that point on that you know we take for granted what we think parents understand about the process as they go through this you know uh challenging Journey and uh it's really an ongoing you know education you know for both providers and parents so just uh moving forward what is the opwdd it's the office for people with developmental disabilities it's the state funded agency um it's actually around $4.5 billion in services for New York State uh they serve around 140,000 individuals here in Long Island I think Nassau County there's approximately 14,000 individuals being serviced by the OPD which is 10% of the total population and I think there's over 100 agencies that serve the Long Island uh region so uh out of the like three agencies 80 of them serve Nassau County uh so there's a lot a lot of providers and tonight you'll see you know at the vendor Expo who's here uh Among Us um opw began in the 1978 so I'm sure you heard of Heraldo Rivera he did an expose on willbrook which is in Stan Arland the state school and as a result New York State um divided up the Department of Mental Health to the office of mental health uh office for people with developmental disabilities and office for people with uh substance abuse um so what is developmental disability so many people always call me they said I have a child who is diagnosed with ADHD or learning disability or I have a child who has a mental illness that is not what a developmental disability so as you can see on the slide it's um it has to occur prior to the age of 22 um some of the examples uh is autism cerebral py epilepsy or any condition that shows a substantial handicap in one's everyday functioning um it's um usually to get these Services you should be at least 3 years old it's very difficult prior to three to get these Services because the state feel that there's early intervention services to help uh families and individuals that need these services um so this is what you need to become eligible if you never did the process uh these are the clinical documentation that you need uh IQ test an Adaptive Behavior measure which is a parent interview to discuss your your child's everyday living skills whether it's motor skills socialization uh daily living skills uh in addition to that um some educational records if needed and some social history or medical documentation that documents the onset of the disability uh so it's really really important that these are the the measurements that are being used um in addition to that many psychologist over the years actually do the wrong testing and it really creates a lot of confusion for the families U sometimes they do an educational uh evaluation or assessments uh welcome uh this handouts uh so many we just began many psychologists U may not do the right IQ test so in these uh handouts here actually in this one actually I gave you a list of all appropriate testing that required for a psychologist to use many times a family would go to the psychologist they would do the wrong testing and then they have to go back again get retested it really extends the entire uh enrollment uh process um so once you have the IQ test and the Adaptive Behavior scale and you have an IQ either under 70 there's some exceptions but you really want to show a substantial handicap so the state has a three-step review process so as a parent you would connect with an agency like ohal or another agency and they would actually help guide you you know through the system so for example if you have the uh psychological evaluation and you have a a psychosocial you would fill out a transmittal form which is actually there's a sample in here that's completed either by an intake specialist by an agency of your choice or you can fill out yourself but it's best to go through it through an agency to help you navigate the system so there's three steps uh most of the time individ ual are approved at step one but sometimes the information there is a little bit fuzzy uh they don't have a clear justification why this trial needs these uh services so there's a step two which other people review the documentation they may ask you for more additional documentation there could be at times where they may ask a parent to actually come in to the local uh district office uh there's a district office in ichar and in Long Island the one in Long Island in the halog and in comac in that area and they may do a face Toof face meeting and they want to see your child and they want to actually uh see this child actually meets the criteria for opw services you don't want to go to step three if you go to step three that means they found your child not eligible for the service and then if you have Medicaid already there's a fair hearing where you would go for example New York City you would go to West 34th Street to the Medicaid office you would sit there for hours and hours in front of a judge and actually I went with a parent once uh to that particular feir hering uh it happened to be that that child his grandmother was informant uh for the interview and not the parent you know the mom was too overwhelmed to be there so the grandmother in her best interest overestimated her grandchild's ability and as a result of overestimating the the child's ability they found the child not eligible and I had to accompany this parent to Advocate on her behalf to at least get an extension of services and to get new documentation so really it's in the best interest as a parent you know it's human nature as a parent we overestimate our children's abilities you really want to judge your child on their on their worst day to show why you need those Services um so I I mentioned earlier about children under three usually uh that's more for early intervention but three and up you could be eligible for opw services but if you have a child who's under 8 years old they uh they call it provisional eligibility which means it's temporary and they may require more documentation as your child gets older to the age of eight and once you reach the age of eight they may ask for updated uh clinical uh documentation um so it's very important that you have constant communication with your coordinator from the agency of your choice uh so in addition to opw uh Medicaid waiver Services they also have non-medicaid waiver services but but the medicated waiver Services is the more complicated uh enrollment eligibility process um as you can see it began in 1992 in New York state I think it began in the mid 80s uh in the in uh the Midwest uh during President Reagan's time there was a little girl named Katie Becket and uh through her advocacy by her family really led to transformation of services in the home as opposed to a state run facility um so in 1992 they came up with a home Community Based Services uh for children with special needs and they wave two rules basically they actually Medicaid funds Services outside uh n outside of a certified facility such as a uh secured um residential setting and also they wave the parents income to make sure that your child still be eligible for Medicaid to pay for these services so that's something that began in 1992 and it really has grown today to 140,000 plus individuals but I I think 990,000 out out of 140,000 are enrolled in the waiver Services as of today there are many other waiver services today we're talking about those for developmental disabilities there's actually another wer service called Care at home for highly complex medical uh fragile uh needs and uh children and that's where children up to the age of 18 where you can have nursing and other habilitation supports inside the house uh so these are some of the services I mean I'm not going to go into detail about the services tonight um there there's um definitions and the handouts and tonight as you go by the vendage you could see um some of the services that They are promoting um but you should just know um there's a these are the lifespan of services whether it's inhome supports housing Day program employment Recreation an after school program a Sunday program there are many many things to help uh families to really maintain and strengthen the family unit due to these uh wer services so in 2013 uh the state uh redesigned the point of entry uh which was is which is uh called the front door process basically it's a single point of entry and they actually asked all the agencies now anyone that's new to services and they need eligibility to go through the front door so what is the front door process [Applause] so the front door process again they really trying to take a person- centered approach and they asking each family to now be interviewed by a state assessment specialist and basically um besides being assessed every parent needs to take uh a 2-hour training approximately it's a 2-hour PowerPoint training at the state and in extenda circumstances you could actually do it over the phone um if possible but the front door process um actually increases the exposure for New York is to be enrolled in uh opw Services um prior to the front door in 2013 there were 1500 new uh individuals enrolled in opw probably over the last two years it's probably more than triple now because of the front door process and I think 22,000 plus families already attended a front door session I don't know how many of them actually got the services but they actually attended a front door uh training [Applause] session uh so so these are the components of the front door um so the first step again like I said earlier determine opw the eligibility based on IQ and adaptive Behavior scale a medical uh form and psychosocial history then you can attend the front door session there's actually one on June 8th in Long Island in the regional office in Hal par see it's from 6:00 to 8:00 p.m. you can actually register on the opw website at www. opwdd.ny.gov um I think I have the information in the in the handouts and once you attend the front door session you have to partake in an assessment over the telephone with the state assessment specialist and I actually gave you the current uh assessment they're using which is going to change so you can see the types of questions they'll ask you in order to better prepare you know for the assessment uh process um so once you get assessed and they determine your child's needs and strengths um they help you develop a preliminary service plan and that's going to help dictate what Services you your Char and you could benefit from um but it's really really important that this constant communication with uh the people you know from the state I do recommend when it gets to this phase over here to the Final Phase to get authorization based on the plan that is the result of this assessment process is to have a non-medicaid service coordinator which is basically someone who navigates the system for you does the handholding and explains how to get the Medicaid how to get the Medicaid Service Coordination which is a pre prerequisite for Home and Community Based Services so you really need someone to do that handholding uh to get the authorization uh from New York state so really the front door is assessing a child and basing it on actual needs not based what's on the program's best interest but based what your child could benefit from um as they uh get enrolled into the system so how long does it take you know to get into to get approved for Medicaid waar services so it takes approximately in the best case scenario 6 to 7 months I had families they slept out the process they took them almost 3 to four years so it's really about a partnership with you and the agency of your choice to work very closely together and that's why it's important to have a non-medicaid service coordinator uh ideally 6 to 7 months you can get uh the Medicaid waiver but uh the complicated piece is getting the Medicaid so the Medicaid could take at least 3 months and you need someone to really help you fill in the application with all the supplemental forms and in the back of my PowerPoint handout I created a userfriendly checklist that tells you all the forms required to get the medicated waiv services on one of our flyers on the fifth or sixth page and there's also helpful uh t uh tips to help you you know expedite the process so why is it important uh to be a recipient of these services so we know these services are really lifelines for the families that we serve um it maintains and strengthen the family units and to share an example with you a parent from the five towns asked me a couple years ago can I get the waiver without the Medicaid so you can't have one without without the other you know there might be a stigma of having Medicaid but again the Medicaid is based on your child's uh developmental you know disability not based on the parent income but if you don't get the Medicaid then and you want those Services a parent is responsible to pay for such services and they could be very very costly and uh just on a on a different note welcome just on a different note uh the state right now is responsible for this service delivery but in two to three years from now the managed care companies will be um more involved in determining who gets which services so for example the front door which is assessing new individuals to the system in 3 to 5 years they'll be assessing all the individuals currently you know getting services and they're going to doing their own reassessments to determine if their services actually meet their actual needs so it's really really really important um and I really feel the number one reason to get these Services is really compassion fatigue and it applies to all parents you know including myself um it's very difficult you know raising children and you know again these Services really help you know maintain and strengthen the family unit um without them you know it's just very overwhelming you that demands of life so whether it's after school weekends uh and as your child gets older throughout the years and they have different needs uh you know there's def definitely different options you know to explore um just to tell you real uh case scenarios I once had a family who had a a teenage child and after seven weeks of sleep away camp called me up who wasn't in getting services from opw and said if you don't take my child into one of your homes I'm going to leave them on your doorstep you know and it's very hard to get housing and there's a wait list and first you need to get the other services to justify why you need housing that should be your last resort so uh it happened to be we were opening up a new home here um in the area and uh we were able to experise the services for this particular individual who now lives in one of our homes another extreme case scenario I had a mom who was so overwhelmed she took her 18-year-old son and just left him in the emergency room until she got the services that she needed and uh you don't want to get to that point you really want to be proactive and tonight's tonight to really be educated and take advantage of all the you know VES who are here tonight um so this is some important contact information uh you know one takeaway message tonight is to go to the opw website read take these handouts this handout is actually what this is the PowerPoint the two hour PowerPoint you can have it you know looking at it before even attending one of these sessions and this is actually the new manual that they came out with on the front door it explains all the services the eligibility and enrollment process and in addition these are the the phone numbers that you need whether you're from Long Island Queens Brooklyn Manhattan stat Island uh who to call for the front door specialist to schedule uh either a front door session or an assessment and uh if it's difficult but basically go on the website June 8th the next front door session I know in Queens it's very difficult I think to get a front door session right now but I think you can go to any borrow whatever convenient for you or some agencies uh like hamaspik or maybe H they may do a front session in Partnership you know with New York state but these are the phone numbers um You probably uh need to constantly call them they did make modifications in 2014 because there weren't enough staff to take all these phone calls but it's really really important uh to reach out or reach out to an agency again of your choice to help you with a a non-medicaid service coordinator uh another resource which is on the Internet is the Long Island Family Support Services advisory Council which Works hand inand with the Long Island regional office they have a ton of resources just for Long Island and they tell you all the updates and they really Advocate on on behalf of the families in Long Island so it's it's www.ss.com um and it's really a lot of lot of uh resourceful information there [Applause] so really the next steps is tonight is not about window shopping you know there's a beautiful vendors a lot of you know uh treats and goodies they're giving out uh it's really about the going to each person the result of today's presentation what I expect is for you to partner with an agency of your choice if you don't have yet you know Medicaid waiver services or opw eligibility is really to go and and have a meaningful conversation with the people who are here tonight upstairs and um you know Ernest Hemingway said never confuse movement with action so it's not just good to walk around to the vendor the vendor and you know at the end of the day you're leaving with nothing you really want to take action tonight uh don't be afraid to ask questions uh there's a lot a lot of questions it's a very complicated process but if you have the right person to do the handholding with you um it could really make it easier um so this is it in a nutshell um if you have any questions uh now is the time to ask um I know some of you came a little bit late but uh feel free and to ask any questions I mean I don't know if I missed this but my son was approved for lwdd services and after the front door actually told gave me wrong information um I they told me I needed a Medicaid service coordinator when I needed a non-medicaid service coordinator so I have a non-medicaid service coordinator through qac who's helping me with the Medicaid service process so that's seven months later through all this paperwork what do I actually get from having I'm not even done yet cuz it hasn't been approve what do what kind of support what do you get from medic not from not Medicaid service or from the Medicaid Ser what am I what do I get in the end and will I be reimbursed for out of pocket expenses that I've been paying like he's been getting Ava therapy at a home he's been getting a lot of services I've just been paying out of pocket with it slash Insurance CU Insurance whatever so it's a fully loaded question but non Medicaid Service Coordination is a very short-term program usually 6 months it can possibly go to 12 months their goal is to help you get the Medicaid simultaneously with the waiver approval so um in addition you want to convert the non-medicaid Service Coordination into a Medicaid Service Coordination which is again the pre requisite to get the way the services there's been confusion with the front door over the initially and they keep changing the the regulations or the rules and it it confuses us as providers and it's really really important to have a non-medicaid service coordinator who actually being very very proactive but you still could be eligible for other services if you have op eligibility even if you don't have the waiver services so for example family reimbursement there's many agencies that offer in Long Island up to $1,000 per year per family um yeah so that's you know so that's something that you can get right now you don't have to wait to get the you know the MSE the Medicaid Service Coordination all the waer services queens and they said that was twice a year every six months and it was $500 at a time and so I did do it once for some of the receipts uh it's just yeah so long island they they they go $3,000 but uh Brooklyn and Queens is probably $ 350 to $500 for fiscal year and the parent a child that has Medicaid W services and you want to do this I mean I'm doing it I've been I started seven months this is something that that any this service you should know that it's like altering and it will make a huge difference to you in in the years to come and that you should go through the miserable process and try to use an organization like this gentleman's or whoever the your service coordinator of choice but I was just using who actually answer the phone so that was the hardest part so that's why I'm telling you right now like the front tour to get that training if they don't answer the phone in the state just go on the website you can register yourself to the training go there and you can run after that person I hate to say it that way but it's an ugly reality uh and if you're at the regional office there and say I want to now do the assessment after the I do my training session and that's why you need a non-medical service coordinator to Advocate on your behalf so I F out all the paperwork with Medicaid supposedly he said it should be okay so it takes 3 months usually if it's filled that properly it goes back 3 months and uh again ideally if it's all done right it takes six to 7 months okay so then I have another like three or four months yes I have like a very basic question Medicaid Health insurance and the Medicaid waiver it's two different things right like if you're on Medicaid insurance doesn't mean you're automatically eligible for the waiver Services doesn't mean you're automa okay we walk in late okay what agency are you I'm from ohal b s so so basically the way it works is that Medicaid funds these services so you need to apply for the Medicaid and the way of simultaneously but before you do that you have to establish eligibility so the best thing you could do right now is bringing a psychological evaluation uh with the right testing an IQ test and adaptive Behavior scale and someone should review it and they have to submit that for eligibility before you can move forward with the front door process who submits that the agency would submit it I don't advise parents to do it they could in themselves but uh if no one looks at the the paperwork uh you can get rejected immediately and will cause a lot of confusion and and headaches you know down the roadn so that's that's a very good question you know your child can have some type of qualifying condition but the substantial handicap needs to be reflected in the in the paperwork so we had over the years I had a few children they had sural py but they they were high functioning enough that they didn't meet the the criteria to get these services so uh it's really how the psychologist documents it and also when you're being interviewed as a parent you have to judge your child on the worst day it's counterintuitive but you really want to justify the need forly Services you know as a mother as a father we say my child could do this my child can do that you're you're going to score you not uh your score won't be sufficient to meet criteria for the eligibility and there are there are agencies that do free psychological evaluations and the psychologist understand what W Services is so uh again if you go to the to the opw website or the Long Island uh family uh you know support uh advisory Council website there's a list of agencies in Long Island and queens that offer free clinical valuation so you don't have to pay out of for in a valuation for cost funs of hours I just paid 25,000 huh I think I just paid 25,000 25,000 no it's a for called Nur or something okay so that's a you don't you don't need such a you don't need to do no no I know this was for school but does that work for this as well or you have to read um yeah see psychologist sometimes you do the wrong testing or sometimes they make mistakes when they do the scoring so actually I'm a school psychologist you know that's my educational background so I get to review everything before I submit it and I may have to speak to the psychologist and explain it wait a minute something doesn't make sense here well the more extensive test I just did covers this as well or it may not cover [Music] it the report just finish you can you can show me the report if you want and I don't have it just finished no problem do they have anything for evaluations for OT or PT for opw services for any kind of services so for activational therapy speech therapy is not funded by office for people with developmental disabilities that's a separate distinct you know entity um if you're child school age you know you could be eligible you know through the Department of Education again the depart education they do their own testing and their testing may not be the pro fre test that opw approves so there's a list here and in this booklet that tells you the fact testing that they do approve um because again you don't waste time and energy or money in these type of situations yes so they up into your child's school well so let's say he's in a general ed school um um and therefore technically I chose to put him in there would they then like deny Services because of that I don't think so um do they look and do research on they don't do research it's based what's written in the in the historical section of the evaluation um for example if you have a child who is 18 or older and they want to go to a day program and a day program is very expensive for the state the tuition for a Day program that state P for is as much as hard probably so uh they feel wait a minute this person's so independent why they not getting competitive employment opportunities and why they asking us to spend that money for a Day program so there's another uh session after me on self-direction it's a whole different conversation where they actually give the parents the authority to have a budget and they spend the money on what they want and not based on what the programs you know best interest but this program this medic wa they don't ask the school district first to chip in more to do more no in Long Island they may accept a an evaluation from the school district and they may go back 3 years you usually we like to have an evaluation within one year the most recent one um but uh they don't they don't ask the school district only when it comes more like to give more services first don't they ask the school district to give more services to help the child before they'll start kicking in or helping so prior to the front door in 2013 they had a special Committee in Long Island and they would ask those type of questions I don't think they they ask those questions anymore but as a Char for example is transitioning um maybe at the age of 16 17 18 uh they're more connected with the school district in terms of what's going to be after you know you know our schools but uh they're not going to investigate it's really a very uh brief assessment it's not that complicated it could take maybe an hour and a half to do the entire assessment it's just getting the evaluation and writing you know from the psychologist you know could take six weeks depending where you go but there are free resources out there for people to do these evaluations we live in Riverdale in the Bronx we have to use go through Bronx based things you can use yeah so for example at ohal we don't service the Bronx um but there are other agencies like the Jewish board they may they have Services out there but um you saw the phone number I think I had the pronx out there you would have to call the Bronx front door and have that conversation but you really want to get the plal documentation you know fully established you know to make sure you need eligibility cuz you don't want to go through the process and then you find out that Char you know not eligible so you really need someone to you know look over the pap let me just say someone who did it by myself they just kept on sending me letters oh this is wrong oh this is wrong oh this is wrong it was very tedious and some of it was just there being ridiculous it's like they wanted a psychosocial when every report had a psychosocial so it's like I literally had to just and they literally wouldn't accept the psychosocial unless it was a separate document it was just they were very very it was extremely tedious like for the opwdd approval they sent me like four or five letters that like made me send in more updated reports so then I had you know the school psychologist then he was just regionally he was evaluated for Horizon so I had from the Board of Ed then I had an evalu that I did for the neuros psychologist from the summer it was just I had the paperwork and I keep digital copies of all my all the reports that I get so I was able to send everything easily but it's just it's very very true um know we had an individual in his 50 who never had Services uh from OPD and uh his mother was in in his I guess in her 90s and uh they came to us at oh hell and actually I think Leia Steinberg was speaking from me good it tonight years ago probably 12 years ago you know one of my staff called her up and we actually got his uh educational documentation from 1957 I remember this his IQ was 50 7 1957 that's how we remember the story and we had to show all this documentation to show that he had a developmental disability try the age of you know 22 in order for him to get Services you know much later in life um but again I I told I shared some you know really extreme you know scenarios I once actually went to LJ uh to the hospital where I had a mother and a child sharing the hospital room together because he had nowhere to go because his mother was you know uh you know definely ill and he stayed in the room with her we were able to help out their son so these are very these are situations where you really want to be proactive be in the system so to speak and get whatever you can you know to show that the you exhausted all options and it really begins with Community Based Services whether it's on Medicaid Service Coordination or uh you know day programs and there's respit respit is the number one requested service yeah so you know respit is very very important and there's after hours for resit there's weekend they go holiday so it really makes a difference um you know for for families with children or social needs um but these are a lot of lot of there's a lot of lot of hand Downs here a lot lot of information I'll be available throughout the night if you have any other personal questions and um again the system is changing so the time is now it's going to be much more difficult probably as the time goes on thank you okay thank you come on