Guest guest Posted October 16, 2010 Report Share Posted October 16, 2010 Hello everyone, First, my thoughts and prayers to Jenn and family. I hope this terrible situation is resolved quickly. In a meeting with my brother 's case manager yesterday, I learned that he has " a community based medicaid waiver. " She explained that the day hab program, in which he is enrolled, gets paid a lump-sum for providing " bundled services " . He has not attended the program for several months due to his fears, which we are frantically working to try to resolve. She said that if they provide a service, such as speech therapy, even if he is not receiving the service from them, either because he is not going to the program, or because they only have 1 speech therapist for 400 people, he cannot go to another provider to receive the service. The long and short of it is that they get paid no matter what they provide. They do not have to account for what services they are providing to any one individual. This system of reimbursement in NYS happened in the last few years, as a result of all the budget cuts. Basically, most of the day hab programs for the over 21 population are little more than baby-sitting services. It took us 3 years to get him a behavioral psychologist. We were told by some providers that they would not be reimbursed. Others told us they were not servicing the over 21 group. Government funds for the over 21 group are few. It is such ashame because for my brother and his peers, services were non-existent when he was a child ( he started school at age 9!). And they are still being left out. My mother refers to them as " the forgotten kids " . (We have a gubernatorial candidate here who wants to cut $20 million from Medicaid). Question: Does anyone know if we can convert this " community based medicaid waiver " to a regular medicaid waiver? And do you think it would be in 's interest to do that? Right now, he is not attending his day program due to his fears. He is fearful not only at the program, but in many venues. We are concerned that because he is not going, they will kick him out of the program, especially if they do not receive funding when he is not there. While his program leaves a lot to be desired, others in the area are worse. Thanks for any suggestions/advice, Irene Sister to , 40+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2010 Report Share Posted October 16, 2010 Irene,Someone is being paid to do his case management. Case management is to help make decisions such as you have described. We have a similar waiver called P. Waiver but there is still people that you can ask question and are there to support you. You really need to call them for suggestion. Cyndi B > > > > > > > Hello everyone, > > > > First, my thoughts and prayers to Jenn and family. I hope this terrible > > situation is resolved quickly. > > > > In a meeting with my brother 's case manager yesterday, I learned > > that he > > has " a community based medicaid waiver. " She explained that the day hab > > program, in which he is enrolled, gets paid a lump-sum for providing > > " bundled > > services " . He has not attended the program for several months due to his > > > > fears, which we are frantically working to try to resolve. She said that > > if > > they provide a service, such as speech therapy, even if he is not receiving > > the > > service from them, either because he is not going to the program, or > > because > > they only have 1 speech therapist for 400 people, he cannot go to another > > provider to receive the service. The long and short of it is that they get > > paid > > no matter what they provide. They do not have to account for what services > > they > > are providing to any one individual. This system of reimbursement in NYS > > > > happened in the last few years, as a result of all the budget cuts. > > Basically, most of the day hab programs for the over 21 population are > > little > > more than baby-sitting services. > > > > It took us 3 years to get him a behavioral psychologist. We were told by > > some > > providers that they would not be reimbursed. Others told us they were not > > servicing the over 21 group. Government funds for the over 21 group > > are few. > > It is such ashame because for my brother and his peers, services were > > non-existent when he was a child ( he started school at age 9!). And they > > are > > still being left out. My mother refers to them as " the forgotten kids " . > > (We > > have a gubernatorial candidate here who wants to cut $20 million from > > Medicaid). > > > > Question: > > Does anyone know if we can convert this " community based medicaid waiver " > > to a > > regular medicaid waiver? And do you think it would be in 's > > interest to > > do that? Right now, he is not attending his day program due to his > > fears. He > > is fearful not only at the program, but in many venues. We are concerned > > that > > because he is not going, they will kick him out of the program, especially > > if > > they do not receive funding when he is not there. While his program leaves > > a > > lot to be desired, others in the area are worse. > > > > Thanks for any suggestions/advice, > > Irene > > Sister to , 40+ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2010 Report Share Posted October 17, 2010 I would definitely talk to your Case Manager to see what the options are. He should have an Individual Service Plan, right? What’s on there? We’re in NY as well and Kayla is on a Medicaid waiver, but I assumed that is just because she is under 21 so they do not take our income into account. I thought that when she turns 21 that she would be on Medicaid/Medicare??? I am so not voting for Paladino. How the heck is he going to cut ½ the state Medicaid budget without it adversely affecting families of the disabled? I know he is playing to the old stereotype of “poor people playing the system” but there are a lot of people who NEED that Medicaid and a lot of people don’t know that Medicaid helps the disabled, not just the poor. Medicaid is a joke for healthcare. Nobody takes it. Fortunately, my daughter’s school has a Medicaid clinic so she can see the dentist and other specialists there. Ecki Mom to Kayla (DownSyndrome/Autism, 4/5/04) and Laurie (PDD-NOS, 7/12/01) http://oppositekids.blogspot.com/ _____ From: [mailto: ] On Behalf Of Irene Diamant Sent: Saturday, October 16, 2010 5:01 PM To: Subject: medicaid waiver Hello everyone, First, my thoughts and prayers to Jenn and family. I hope this terrible situation is resolved quickly. In a meeting with my brother 's case manager yesterday, I learned that he has " a community based medicaid waiver. " She explained that the day hab program, in which he is enrolled, gets paid a lump-sum for providing " bundled services " . He has not attended the program for several months due to his fears, which we are frantically working to try to resolve. She said that if they provide a service, such as speech therapy, even if he is not receiving the service from them, either because he is not going to the program, or because they only have 1 speech therapist for 400 people, he cannot go to another provider to receive the service. The long and short of it is that they get paid no matter what they provide. They do not have to account for what services they are providing to any one individual. This system of reimbursement in NYS happened in the last few years, as a result of all the budget cuts. Basically, most of the day hab programs for the over 21 population are little more than baby-sitting services. It took us 3 years to get him a behavioral psychologist. We were told by some providers that they would not be reimbursed. Others told us they were not servicing the over 21 group. Government funds for the over 21 group are few. It is such ashame because for my brother and his peers, services were non-existent when he was a child ( he started school at age 9!). And they are still being left out. My mother refers to them as " the forgotten kids " . (We have a gubernatorial candidate here who wants to cut $20 million from Medicaid). Question: Does anyone know if we can convert this " community based medicaid waiver " to a regular medicaid waiver? And do you think it would be in 's interest to do that? Right now, he is not attending his day program due to his fears. He is fearful not only at the program, but in many venues. We are concerned that because he is not going, they will kick him out of the program, especially if they do not receive funding when he is not there. While his program leaves a lot to be desired, others in the area are worse. Thanks for any suggestions/advice, Irene Sister to , 40+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Sara. Cyndi and Ecki, Thanks for your responses. We do have a case manager, but she is affiliated with 's day program. As a result, she is more loyal to them than to .  She's very nice, but she never has any suggestions for how to help him. When we asked if she could help us find a behavioral psychologist, she said no one else she supports ever needed one--hard to believe! We had another case manager before her, who was with another agency, but we never saw nor heard from him.  We have heard similar stories about case managers from friends and acquaintances. It is clear we have to find a case manager who is more helpful or do what Sara is doing with Self Determination. Sara, who assigns the Fiscal Agent? Ecki, They do get medicare/medicaid when over 21. However, the medicaid waiver still applies. I have started doing some research on line and basically, the purpose of the medicaid waiver is to keep disabled people out of institutions, which are much more expensive. Thanks, Irene Sister to , 40+ mosaic DS, ASD ________________________________ To: Sent: Sun, October 17, 2010 4:28:55 PM Subject: RE: medicaid waiver  I would definitely talk to your Case Manager to see what the options are. He should have an Individual Service Plan, right? What’s on there? We’re in NY as well and Kayla is on a Medicaid waiver, but I assumed that is just because she is under 21 so they do not take our income into account. I thought that when she turns 21 that she would be on Medicaid/Medicare??? I am so not voting for Paladino. How the heck is he going to cut ½ the state Medicaid budget without it adversely affecting families of the disabled? I know he is playing to the old stereotype of “poor people playing the system†but there are a lot of people who NEED that Medicaid and a lot of people don’t know that Medicaid helps the disabled, not just the poor. Medicaid is a joke for healthcare. Nobody takes it. Fortunately, my daughter’s school has a Medicaid clinic so she can see the dentist and other specialists there. Ecki Mom to Kayla (DownSyndrome/Autism, 4/5/04) and Laurie (PDD-NOS, 7/12/01) http://oppositekids.blogspot.com/ _____ From: [mailto: ] On Behalf Of Irene Diamant Sent: Saturday, October 16, 2010 5:01 PM To: Subject: medicaid waiver Hello everyone, First, my thoughts and prayers to Jenn and family. I hope this terrible situation is resolved quickly. In a meeting with my brother 's case manager yesterday, I learned that he has " a community based medicaid waiver. " She explained that the day hab program, in which he is enrolled, gets paid a lump-sum for providing " bundled services " . He has not attended the program for several months due to his fears, which we are frantically working to try to resolve. She said that if they provide a service, such as speech therapy, even if he is not receiving the service from them, either because he is not going to the program, or because they only have 1 speech therapist for 400 people, he cannot go to another provider to receive the service. The long and short of it is that they get paid no matter what they provide. They do not have to account for what services they are providing to any one individual. This system of reimbursement in NYS happened in the last few years, as a result of all the budget cuts. Basically, most of the day hab programs for the over 21 population are little more than baby-sitting services. It took us 3 years to get him a behavioral psychologist. We were told by some providers that they would not be reimbursed. Others told us they were not servicing the over 21 group. Government funds for the over 21 group are few. It is such ashame because for my brother and his peers, services were non-existent when he was a child ( he started school at age 9!). And they are still being left out. My mother refers to them as " the forgotten kids " . (We have a gubernatorial candidate here who wants to cut $20 million from Medicaid). Question: Does anyone know if we can convert this " community based medicaid waiver " to a regular medicaid waiver? And do you think it would be in 's interest to do that? Right now, he is not attending his day program due to his fears. He is fearful not only at the program, but in many venues. We are concerned that because he is not going, they will kick him out of the program, especially if they do not receive funding when he is not there. While his program leaves a lot to be desired, others in the area are worse. Thanks for any suggestions/advice, Irene Sister to , 40+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Call the local autism society and ask them for help with someone that could answer your questions. Be sure to tell them the case management is not helping with your questions. What state are you in? I have a book I can look up places that help with our mentally challenged persons. Cyndi Burns, mom to 15 w/ds/autism > > Sara. Cyndi and Ecki, > > Thanks for your responses. We do have a case manager, but she is affiliated > with 's day program. As a result, she is more loyal to them than to > .  She's very nice, but she never has any suggestions for how to help > him. When we asked if she could help us find a behavioral psychologist, > she said no one else she supports ever needed one--hard to believe! We had > another case manager before her, who was with another agency, but we never saw > nor heard from him.  We have heard similar stories about case managers from > friends and acquaintances. > > > It is clear we have to find a case manager who is more helpful or do what Sara > is doing with Self Determination. Sara, who assigns the Fiscal Agent? > > Ecki, They do get medicare/medicaid when over 21. However, the medicaid waiver > still applies. I have started doing some research on line and basically, the > purpose of the medicaid waiver is to keep disabled people out of institutions, > which are much more expensive. > > Thanks, > Irene > Sister to , 40+ mosaic DS, ASD > > > ________________________________ > > To: > Sent: Sun, October 17, 2010 4:28:55 PM > Subject: RE: medicaid waiver > >  > I would definitely talk to your Case Manager to see what the options are. He > should have an Individual Service Plan, right? What’s on there? > > We’re in NY as well and Kayla is on a Medicaid waiver, but I assumed that is > just because she is under 21 so they do not take our income into account. I > thought that when she turns 21 that she would be on Medicaid/Medicare??? > > I am so not voting for Paladino. How the heck is he going to cut ½ the state > Medicaid budget without it adversely affecting families of the disabled? I > know he is playing to the old stereotype of “poor people playing the system†> but there are a lot of people who NEED that Medicaid and a lot of people > don’t know that Medicaid helps the disabled, not just the poor. > > Medicaid is a joke for healthcare. Nobody takes it. Fortunately, my > daughter’s school has a Medicaid clinic so she can see the dentist and other > specialists there. > > Ecki > Mom to Kayla (DownSyndrome/Autism, 4/5/04) and Laurie (PDD-NOS, 7/12/01) > http://oppositekids.blogspot.com/ > > _____ > > From: [mailto: ] On Behalf > Of Irene Diamant > Sent: Saturday, October 16, 2010 5:01 PM > To: > Subject: medicaid waiver > > Hello everyone, > > First, my thoughts and prayers to Jenn and family. I hope this terrible > situation is resolved quickly. > > In a meeting with my brother 's case manager yesterday, I learned > that he > has " a community based medicaid waiver. " She explained that the day hab > program, in which he is enrolled, gets paid a lump-sum for providing > " bundled > services " . He has not attended the program for several months due to his > fears, which we are frantically working to try to resolve. She said that if > > they provide a service, such as speech therapy, even if he is not receiving > the > service from them, either because he is not going to the program, or because > > they only have 1 speech therapist for 400 people, he cannot go to another > provider to receive the service. The long and short of it is that they get > paid > no matter what they provide. They do not have to account for what services > they > are providing to any one individual. This system of reimbursement in NYS > happened in the last few years, as a result of all the budget cuts. > Basically, most of the day hab programs for the over 21 population are > little > more than baby-sitting services. > > It took us 3 years to get him a behavioral psychologist. We were told by > some > providers that they would not be reimbursed. Others told us they were not > servicing the over 21 group. Government funds for the over 21 group are > few. > It is such ashame because for my brother and his peers, services were > non-existent when he was a child ( he started school at age 9!). And they > are > still being left out. My mother refers to them as " the forgotten kids " . (We > > have a gubernatorial candidate here who wants to cut $20 million from > Medicaid). > > Question: > Does anyone know if we can convert this " community based medicaid waiver " to > a > regular medicaid waiver? And do you think it would be in 's > interest to > do that? Right now, he is not attending his day program due to his fears. > He > is fearful not only at the program, but in many venues. We are concerned > that > because he is not going, they will kick him out of the program, especially > if > they do not receive funding when he is not there. While his program leaves > a > lot to be desired, others in the area are worse. > > Thanks for any suggestions/advice, > Irene > Sister to , 40+ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2010 Report Share Posted October 18, 2010 Thanks, Cyndi. I will try the autism society. We live in Queens County, New York. ________________________________ To: Sent: Mon, October 18, 2010 11:17:27 PM Subject: Re: medicaid waiver  Call the local autism society and ask them for help with someone that could answer your questions. Be sure to tell them the case management is not helping with your questions. What state are you in? I have a book I can look up places that help with our mentally challenged persons. Cyndi Burns, mom to 15 w/ds/autism > > Sara. Cyndi and Ecki, > > Thanks for your responses. We do have a case manager, but she is affiliated > with 's day program. As a result, she is more loyal to them than to > .  She's very nice, but she never has any suggestions for how to help > him. When we asked if she could help us find a behavioral psychologist, > she said no one else she supports ever needed one--hard to believe! We had > another case manager before her, who was with another agency, but we never saw > nor heard from him.  We have heard similar stories about case managers from > friends and acquaintances. > > > It is clear we have to find a case manager who is more helpful or do what Sara > is doing with Self Determination. Sara, who assigns the Fiscal Agent? > > Ecki, They do get medicare/medicaid when over 21. However, the medicaid >waiver > > still applies. I have started doing some research on line and basically, the > purpose of the medicaid waiver is to keep disabled people out of institutions, > which are much more expensive. > > Thanks, > Irene > Sister to , 40+ mosaic DS, ASD > > > ________________________________ > > To: > Sent: Sun, October 17, 2010 4:28:55 PM > Subject: RE: medicaid waiver > >  > I would definitely talk to your Case Manager to see what the options are. He > should have an Individual Service Plan, right? What’s on there? > > We’re in NY as well and Kayla is on a Medicaid waiver, but I assumed that is > just because she is under 21 so they do not take our income into account. I > thought that when she turns 21 that she would be on Medicaid/Medicare??? > > I am so not voting for Paladino. How the heck is he going to cut ½ the state > Medicaid budget without it adversely affecting families of the disabled? I > know he is playing to the old stereotype of “poor people playing the system†> but there are a lot of people who NEED that Medicaid and a lot of people > don’t know that Medicaid helps the disabled, not just the poor. > > Medicaid is a joke for healthcare. Nobody takes it. Fortunately, my > daughter’s school has a Medicaid clinic so she can see the dentist and other > specialists there. > > Ecki > Mom to Kayla (DownSyndrome/Autism, 4/5/04) and Laurie (PDD-NOS, 7/12/01) > http://oppositekids.blogspot.com/ > > _____ > > From: [mailto: ] On Behalf > Of Irene Diamant > Sent: Saturday, October 16, 2010 5:01 PM > To: > Subject: medicaid waiver > > Hello everyone, > > First, my thoughts and prayers to Jenn and family. I hope this terrible > situation is resolved quickly. > > In a meeting with my brother 's case manager yesterday, I learned > that he > has " a community based medicaid waiver. " She explained that the day hab > program, in which he is enrolled, gets paid a lump-sum for providing > " bundled > services " . He has not attended the program for several months due to his > fears, which we are frantically working to try to resolve. She said that if > > they provide a service, such as speech therapy, even if he is not receiving > the > service from them, either because he is not going to the program, or because > > they only have 1 speech therapist for 400 people, he cannot go to another > provider to receive the service. The long and short of it is that they get > paid > no matter what they provide. They do not have to account for what services > they > are providing to any one individual. This system of reimbursement in NYS > happened in the last few years, as a result of all the budget cuts. > Basically, most of the day hab programs for the over 21 population are > little > more than baby-sitting services. > > It took us 3 years to get him a behavioral psychologist. We were told by > some > providers that they would not be reimbursed. Others told us they were not > servicing the over 21 group. Government funds for the over 21 group are > few. > It is such ashame because for my brother and his peers, services were > non-existent when he was a child ( he started school at age 9!). And they > are > still being left out. My mother refers to them as " the forgotten kids " . (We > > have a gubernatorial candidate here who wants to cut $20 million from > Medicaid). > > Question: > Does anyone know if we can convert this " community based medicaid waiver " to > a > regular medicaid waiver? And do you think it would be in 's > interest to > do that? Right now, he is not attending his day program due to his fears. > He > is fearful not only at the program, but in many venues. We are concerned > that > because he is not going, they will kick him out of the program, especially > if > they do not receive funding when he is not there. While his program leaves > a > lot to be desired, others in the area are worse. > > Thanks for any suggestions/advice, > Irene > Sister to , 40+ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Thank you very much, Cyndi. ________________________________ To: Sent: Tue, October 19, 2010 8:17:58 AM Subject: Re: medicaid waiver  Irene, The book I am looking in was published in 2000 so I hope the Resources are still valid and open.If they have email or websites I put all including phone numbers. I hope this helps. Cyndi B The Advocacy Center web: http://www.advocacycenter.com email: advocacy@... (in NY) Autistic Services, Inc: (888)-Autism4: (716)873-6997 NYSArc NY Commimittee on Quality of Care web: http://www.eqe.state.ny.us Parent to Parent of New York email: Parent2Par@... www.parenttoparentnys.org Family Support Project for the Developemental Disabilities > > > > Sara. Cyndi and Ecki, > > > > Thanks for your responses. We do have a case manager, but she is affiliated > > with 's day program. As a result, she is more loyal to them than to > > .  She's very nice, but she never has any suggestions for how to help > > > him. When we asked if she could help us find a behavioral psychologist, > > she said no one else she supports ever needed one--hard to believe! We had > > another case manager before her, who was with another agency, but we never >saw > > > > nor heard from him.  We have heard similar stories about case managers from > > friends and acquaintances. > > > > > > It is clear we have to find a case manager who is more helpful or do what >Sara > > > > is doing with Self Determination. Sara, who assigns the Fiscal Agent? > > > > Ecki, They do get medicare/medicaid when over 21. However, the medicaid > >waiver > > > > still applies. I have started doing some research on line and basically, the > > > purpose of the medicaid waiver is to keep disabled people out of >institutions, > > > > which are much more expensive. > > > > Thanks, > > Irene > > Sister to , 40+ mosaic DS, ASD > > > > > > ________________________________ > > From: Ecki Stern <yulan@> > > To: > > Sent: Sun, October 17, 2010 4:28:55 PM > > Subject: RE: medicaid waiver > > > >  > > I would definitely talk to your Case Manager to see what the options are. He > > should have an Individual Service Plan, right? What’s on there? > > > > We’re in NY as well and Kayla is on a Medicaid waiver, but I assumed that is > > just because she is under 21 so they do not take our income into account. I > > thought that when she turns 21 that she would be on Medicaid/Medicare??? > > > > I am so not voting for Paladino. How the heck is he going to cut ½ the state > > Medicaid budget without it adversely affecting families of the disabled? I > > know he is playing to the old stereotype of “poor people playing the system†> > but there are a lot of people who NEED that Medicaid and a lot of people > > don’t know that Medicaid helps the disabled, not just the poor. > > > > Medicaid is a joke for healthcare. Nobody takes it. Fortunately, my > > daughter’s school has a Medicaid clinic so she can see the dentist and other > > specialists there. > > > > Ecki > > Mom to Kayla (DownSyndrome/Autism, 4/5/04) and Laurie (PDD-NOS, 7/12/01) > > http://oppositekids.blogspot.com/ > > > > _____ > > > > From: [mailto: ] On Behalf > > Of Irene Diamant > > Sent: Saturday, October 16, 2010 5:01 PM > > To: > > Subject: medicaid waiver > > > > Hello everyone, > > > > First, my thoughts and prayers to Jenn and family. I hope this terrible > > situation is resolved quickly. > > > > In a meeting with my brother 's case manager yesterday, I learned > > that he > > has " a community based medicaid waiver. " She explained that the day hab > > program, in which he is enrolled, gets paid a lump-sum for providing > > " bundled > > services " . He has not attended the program for several months due to his > > fears, which we are frantically working to try to resolve. She said that if > > > > they provide a service, such as speech therapy, even if he is not receiving > > the > > service from them, either because he is not going to the program, or because > > > > they only have 1 speech therapist for 400 people, he cannot go to another > > provider to receive the service. The long and short of it is that they get > > paid > > no matter what they provide. They do not have to account for what services > > they > > are providing to any one individual. This system of reimbursement in NYS > > happened in the last few years, as a result of all the budget cuts. > > Basically, most of the day hab programs for the over 21 population are > > little > > more than baby-sitting services. > > > > It took us 3 years to get him a behavioral psychologist. We were told by > > some > > providers that they would not be reimbursed. Others told us they were not > > servicing the over 21 group. Government funds for the over 21 group are > > few. > > It is such ashame because for my brother and his peers, services were > > non-existent when he was a child ( he started school at age 9!). And they > > are > > still being left out. My mother refers to them as " the forgotten kids " . (We > > > > have a gubernatorial candidate here who wants to cut $20 million from > > Medicaid). > > > > Question: > > Does anyone know if we can convert this " community based medicaid waiver " to > > a > > regular medicaid waiver? And do you think it would be in 's > > interest to > > do that? Right now, he is not attending his day program due to his fears. > > He > > is fearful not only at the program, but in many venues. We are concerned > > that > > because he is not going, they will kick him out of the program, especially > > if > > they do not receive funding when he is not there. While his program leaves > > a > > lot to be desired, others in the area are worse. > > > > Thanks for any suggestions/advice, > > Irene > > Sister to , 40+ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Thanks very much, Sara. I think the support coordinator is with his day program agency, too. There is someone who attends the semi-annual meetings at 's program, but doesn't contribute very much.  Like the case manager, there is a conflict of interest. In any case, I will find out definitively and seek other options. Thanks for the information. Irene ________________________________ To: Sent: Tue, October 19, 2010 8:51:45 AM Subject: Re: medicaid waiver  I don't remember what state you are in Irene. In our state, there is only one FIscal Agent. However, if your brother is receiving MEDICAID WAIVER< in addition to the case manager who works for that agency, you SHOULD have a support coordinator. In some states, that is a state employee and in others (like mine) the state contracts out to private companies. The whole point is that they work for your brother's interest (that is the way it is supposed to be). You SHOULD be able to call state and the department of DD or ID (or whatever it is called in your state) and ASK who should be your borther's support coordinator. And they should be able to direct you to get some anaswers. IN FACT< the agency supplying services should know who his support coordinator is. So for example, when my son DID NOT HAVE the self determination waiver but was getting his services from an agency, the agency would send out a case manager once a month to check paper work, see that there was food in the house (and their most importnat function) :`)) check the water temp in the kitchen!!!! Then his support coordinator would come out - usually unannounced or would meet Elie in the community to be sure that he was OK, that he was happy (different from being fed and clothed), and checking to be sure that the goals in his ISP were being met. Now that we are self determined, he still has a support coordinator, he still checks on Elie at unannounced times, and he checks the paperwork. Since it is Elie's own home (Elie rents a house with his caregiver), the water temp is not checked. Occasionally the support coordinator opens the fridge or checks cupboards to see that there is food, and o Elie's room to see that it looks clean (it is never in an order we would like because that is not ELIE ORDER). He also scalls me if there are concerns (I live on the other side of a mountain, about 45 miles from my son). We made a checklist goal sheet to faciliatate reporting of his goals to make it easier for his caregiver. We work together to find useful activities for Elie that he likes. And we work as a team. The caregiver, support coordinator, ELie and me. On Mon, Oct 18, 2010 at 11:03 PM, Irene Diamant wrote: > > > Sara. Cyndi and Ecki, > > Thanks for your responses. We do have a case manager, but she is > affiliated > with 's day program. As a result, she is more loyal to them than to > > . She's very nice, but she never has any suggestions for how to > help > him. When we asked if she could help us find a behavioral psychologist, > she said no one else she supports ever needed one--hard to believe! We had > another case manager before her, who was with another agency, but we never > saw > nor heard from him. We have heard similar stories about case managers > from > friends and acquaintances. > > It is clear we have to find a case manager who is more helpful or do what > Sara > is doing with Self Determination. Sara, who assigns the Fiscal Agent? > > Ecki, They do get medicare/medicaid when over 21. However, the medicaid > waiver > still applies. I have started doing some research on line and basically, > the > purpose of the medicaid waiver is to keep disabled people out of > institutions, > which are much more expensive. > > Thanks, > Irene > Sister to , 40+ mosaic DS, ASD > > ________________________________ > From: Ecki Stern <yulan@... <yulan%40ecki.com>> > To: > Sent: Sun, October 17, 2010 4:28:55 PM > Subject: RE: medicaid waiver > > > I would definitely talk to your Case Manager to see what the options are. > He > should have an Individual Service Plan, right? What’s on there? > > We’re in NY as well and Kayla is on a Medicaid waiver, but I assumed that > is > just because she is under 21 so they do not take our income into account. I > thought that when she turns 21 that she would be on Medicaid/Medicare??? > > I am so not voting for Paladino. How the heck is he going to cut ½ the > state > Medicaid budget without it adversely affecting families of the disabled? I > know he is playing to the old stereotype of “poor people playing the > system†> but there are a lot of people who NEED that Medicaid and a lot of people > don’t know that Medicaid helps the disabled, not just the poor. > > Medicaid is a joke for healthcare. Nobody takes it. Fortunately, my > daughter’s school has a Medicaid clinic so she can see the dentist and > other > specialists there. > > Ecki > Mom to Kayla (DownSyndrome/Autism, 4/5/04) and Laurie (PDD-NOS, 7/12/01) > http://oppositekids.blogspot.com/ > > _____ > > From: [mailto: > ] On Behalf > Of Irene Diamant > Sent: Saturday, October 16, 2010 5:01 PM > To: > Subject: medicaid waiver > > Hello everyone, > > First, my thoughts and prayers to Jenn and family. I hope this terrible > situation is resolved quickly. > > In a meeting with my brother 's case manager yesterday, I learned > that he > has " a community based medicaid waiver. " She explained that the day hab > program, in which he is enrolled, gets paid a lump-sum for providing > " bundled > services " . He has not attended the program for several months due to his > fears, which we are frantically working to try to resolve. She said that if > > they provide a service, such as speech therapy, even if he is not receiving > the > service from them, either because he is not going to the program, or > because > > they only have 1 speech therapist for 400 people, he cannot go to another > provider to receive the service. The long and short of it is that they get > paid > no matter what they provide. They do not have to account for what services > they > are providing to any one individual. This system of reimbursement in NYS > happened in the last few years, as a result of all the budget cuts. > Basically, most of the day hab programs for the over 21 population are > little > more than baby-sitting services. > > It took us 3 years to get him a behavioral psychologist. We were told by > some > providers that they would not be reimbursed. Others told us they were not > servicing the over 21 group. Government funds for the over 21 group are > few. > It is such ashame because for my brother and his peers, services were > non-existent when he was a child ( he started school at age 9!). And they > are > still being left out. My mother refers to them as " the forgotten kids " . (We > > have a gubernatorial candidate here who wants to cut $20 million from > Medicaid). > > Question: > Does anyone know if we can convert this " community based medicaid waiver " > to > a > regular medicaid waiver? And do you think it would be in 's > interest to > do that? Right now, he is not attending his day program due to his fears. > He > is fearful not only at the program, but in many venues. We are concerned > that > because he is not going, they will kick him out of the program, especially > if > they do not receive funding when he is not there. While his program leaves > a > lot to be desired, others in the area are worse. > > Thanks for any suggestions/advice, > Irene > Sister to , 40+ > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.