APD Freeze

[Guest guest]

Hi Sherry,

For what it is worth, following is the announcement issued by APD:

Be sure your support coordinator is aware of items highlighted in blue below re: instances where health & safety needs are unmet.

Just to let you know, this freeze has nothing at all to do with the waitlist. APD is projecting a current year (fiscal year ending 6/30/2011) deficit of $170 million in the HCBS waiver program.....the deficit for this current fiscal year in progress has not/will not include even $1 spent on the wait list. What this freeze is demonstrating is that Governor is keeping to his rhetoric........he is on the record saying he will not tolerate deficits in any State agency.

Call me anytime.

Lucille

Agency For Persons with Disabilities

3-25-11

Talking Points - Cost Plan Freeze

1. The Agency has a projected deficit $170 million in the home and community based waiver program for FY 2010-11.

2. The agency is invoking its authority under chapter 393.0661(7) and (8), F.S. in consultation with AHCA to significantly address the deficit in the home and community based services waiver program in the most expeditious by taking immediate action to reduce expenditures for this fiscal year.

3. Cost Plan Freeze:

· The agency has taken immediate action to freeze cost plans at the current approved amount for current waiver enrollees unless the individual is in a crisis situation as defined by rule, i.e., homeless, dangerous to self or others, and caregiver unable to give care.

· The ABC system will be coded to ensure cost plan increases cannot be made at the local level. The ABC system will be down for maintenance from 6:00 p.m., March 25, 2011 to midnight March 25, 2011 to accomplish this task.

· It is imperative that the Waiver Support Coordinator identify and access any natural and community resources to meet the individual’s changing needs. Additionally, services must be reallocated within the current approved cost plan amount to meet the individual’s needs. These requirements apply to any request for increased services whether or not the crisis criteria are met.

· The agency will work with waiver support coordinators and individuals to ensure health and safety needs are immediately addressed.

· Any concerns regarding health and safety not resolved through the new procedures for request for service increases should be immediately addressed with the area administrator or designee in the area office.

· Any service requests pending at APS as of March 11, 2011, will be returned to the area office for review based on the new cost plan freeze procedures.

· Any service requests pending in the area offices must be processed using the cost plan freeze procedures.

· New crisis waiver enrollment will be processed in the normal manner.

[Guest guest]

We received a call today from our support coordinator to let us know that there will be no increase in services allowed for anyone currently on medwaiver as all costplans etc. have been frozen. This happened Friday and the support coordinators were notified today.

I'm sure this is of little concern to those of you on the waitlist and I do sympathize with you all believe me. Do bear in mind that some of us waited 11 years with no hope whatsoever for any services in this state before the original medwaiver enrollment. We have a very medically involved, low functioning adult child with a dx of Down Syndrome and Autism. Both her dad and I have major medical issues as well. We could never have survived without the help we've received thru medwaiver and the prospect of these upcoming bidget cuts is certainly frightening for everyone.

Sherry

[Guest guest]

I'm sorry sherry but there are a lot out there which take advantage of the waiver. Especially when the family income is not taken in consideration. And the mom is a home stay mom.And asking PCA and behavior assistant to become personal maids or baby sitters. Which is not what they are for.There are people still losing their homes out there. The community is what APD needs to bring support to out sources in the community. The community resources are so limited and finding good people to care for our kids have develop parents to even try to steal good care takers away from friends. Believe me it happen to me once. What is going to happen.? There are more budget cuts and less support to teachers. Thanks to our Governor. Most of the kids don't get that autism label in the school setting till kindergarten. Not every teacher provides or even is educated on PECS and ABA and Floortime and everything else. So what happens now with all the budget cuts? Honestly I'm afraid to even think about it. Connected by MOTOBLUR™ on T-Mobile APD Freeze We received a call today from our support coordinator to let us know that there will be no increase in services allowed for anyone currently on medwaiver as all costplans etc. have been frozen. This happened Friday and the support coordinators were notified today. I'm sure this is of little concern to those of you on the waitlist and I do sympathize with you all believe me. Do bear in mind that some of us waited 11 years with no hope whatsoever for any services in this state before the original medwaiver enrollment. We have a very medically involved, low functioning adult child with a dx of Down Syndrome and Autism. Both her dad and I have major medical issues as well. We could never have survived without the help we've received thru medwaiver and the prospect of these upcoming bidget cuts is certainly frightening for everyone. Sherry

[Guest guest]

I have a copy of the announcement if anyone wants it. Those that meet crisis criteria will still be allowed changes, but I am pretty sure those will slip through the cracks. Without the waiver my son would be institutionalized and it is still a fear I face everyday. Any cut in services would mean him being removed from the home as his behaviors are that severe. They say there is a $170 million budget deficit for the waiver alone and I have to wonder how. None of the cuts will go to people on the waitlist

 

We received a call today from our support coordinator to let us know that there will be no increase in services allowed for anyone currently on medwaiver as all costplans etc. have been frozen. This happened Friday and the support coordinators were notified today.

 

I'm sure this is of little concern to those of you on the waitlist and I do sympathize with you all believe me. Do bear in mind that some of us waited 11 years with no hope whatsoever for any services in this state before the original medwaiver enrollment. We have a very medically involved, low functioning adult child with a dx of Down Syndrome and Autism. Both her dad and I have major medical issues as well. We could never have survived without the help we've received thru medwaiver and the prospect of these upcoming bidget cuts is certainly frightening for everyone.

 

Sherry

[Guest guest]

I guess I'm not understanding 's response.What does people losing their homes have to do with med waiver freezes?And I'm not sure what is meant by people taking advantage of the waiver. The child gets the services deemed necessary in the yearly support plan. How is that "taking advantage"?EileenSent from my iPhone

I'm sorry sherry but there are a lot out there which take advantage of the waiver. Especially when the family income is not taken in consideration. And the mom is a home stay mom.And asking PCA and behavior assistant to become personal maids or baby sitters. Which is not what they are for.There are people still losing their homes out there. The community is what APD needs to bring support to out sources in the community. The community resources are so limited and finding good people to care for our kids have develop parents to even try to steal good care takers away from friends. Believe me it happen to me once. What is going to happen.? There are more budget cuts and less support to teachers. Thanks to our Governor. Most of the kids don't get that autism label in the school setting till kindergarten. Not every teacher provides or even is educated on PECS and ABA and Floortime and everything else. So what happens now with all the budget cuts? Honestly I'm afraid to even think about it. Connected by MOTOBLURâ„¢ on T-Mobile APD Freeze

We received a call today from our support coordinator to let us know that there will be no increase in services allowed for anyone currently on medwaiver as all costplans etc. have been frozen. This happened Friday and the support coordinators were notified today.

I'm sure this is of little concern to those of you on the waitlist and I do sympathize with you all believe me. Do bear in mind that some of us waited 11 years with no hope whatsoever for any services in this state before the original medwaiver enrollment. We have a very medically involved, low functioning adult child with a dx of Down Syndrome and Autism. Both her dad and I have major medical issues as well. We could never have survived without the help we've received thru medwaiver and the prospect of these upcoming bidget cuts is certainly frightening for everyone.

Sherry

[Guest guest]

Of course there are alot of families who take advantage of the waiver. There are

alot of families who take advantage of everything....and alot of families who

don't. By the time we got on the waiver it was clear to all that both I and my

11 yo child were on the brink of institutionalization. I've heard all the

stories of incredible abuse of the waiver by selfish families and it p**ses me

off as much as it does you. We don't happen to be one of those families.

Sherry

>

> I'm sorry sherry but there are a lot out there which take advantage of the

waiver. Especially when the family income is not taken in consideration. And the

mom is a home stay mom.And asking PCA and behavior assistant to become personal

maids or baby sitters. Which is not what they are for.There are people still

losing their homes out there.

[Guest guest]

One of the purpose of the medicaid waiver is to make sure income is not taken into account. On disability I make too much to qualify for my son to get medicaid. I am a stay at home mom, with a child that is home full time as he is on hospital homebound because the schools can't handle him. Every family has their own unique circumstances and I suggest everyone that is in crisis on the waitlist apply using the crisis tool.

PCA does NOT use waiver funds, PCA is paid for by medicaid. You do not have to be on the waiver to get PCA. The waiver does provide " babysitters " that is respite. Some children and adults are so severe that parents use the respite worker in their home to watch them just so they can get some household chores done. The purpose of a behavioral assistant is to help implement the plan, if that is not being done, the provider needs to speak up.

 

Of course there are alot of families who take advantage of the waiver. There are alot of families who take advantage of everything....and alot of families who don't. By the time we got on the waiver it was clear to all that both I and my 11 yo child were on the brink of institutionalization. I've heard all the stories of incredible abuse of the waiver by selfish families and it p**ses me off as much as it does you. We don't happen to be one of those families.

Sherry

>

> I'm sorry sherry but there are a lot out there which take advantage of the waiver. Especially when the family income is not taken in consideration. And the mom is a home stay mom.And asking PCA and behavior assistant to become personal maids or baby sitters. Which is not what they are for.There are people still losing their homes out there.

[Guest guest]

I sympathize with you guys who have honestly used the waiver properly and really need it and are now seeing cuts. I have not seen this letter. The APD does not communicate with those on the wait list. But sounds like you can't get new or additional services, but you can still get some service? If that's the case you can still get something. Something is better than nothing.Please note, many of the kids on the wait list are in danger of being institutionalized as well. Just because we haven't gotten services doesn't mean we don't need them. We've been on the list now for about ten years and things are just as tough all around. When your kids were on the list it was based on a number system, and when they finally got around to your number (which of course took years) you got service. The number system is gone, now the only way to get service is through death of a caretaker or loss of a home. As a single parent, that is frightening to me to know that my child will not get anything until I die and at that point I won't be around to help her to make sure she does get service. This sucks all around.

I have a copy of the announcement if anyone wants it. Those that meet crisis criteria will still be allowed changes, but I am pretty sure those will slip through the cracks. Without the waiver my son would be institutionalized and it is still a fear I face everyday. Any cut in services would mean him being removed from the home as his behaviors are that severe. They say there is a $170 million budget deficit for the waiver alone and I have to wonder how. None of the cuts will go to people on the waitlist

We received a call today from our support coordinator to let us know that there will be no increase in services allowed for anyone currently on medwaiver as all costplans etc. have been frozen. This happened Friday and the support coordinators were notified today.

I'm sure this is of little concern to those of you on the waitlist and I do sympathize with you all believe me. Do bear in mind that some of us waited 11 years with no hope whatsoever for any services in this state before the original medwaiver enrollment. We have a very medically involved, low functioning adult child with a dx of Down Syndrome and Autism. Both her dad and I have major medical issues as well. We could never have survived without the help we've received thru medwaiver and the prospect of these upcoming bidget cuts is certainly frightening for everyone.

Sherry

[Guest guest]

I totally understand about your son being homebound. However that's by choice. That's what you felt your child needed. However there are a lot of parents who still are in the school system fighting. I'm sorry you and your son had to make that decision. But he has the right to get an appropriate education. That's his right till 21 or 22. I don't know what his age is but honestly in my heart I know schools are not all equal. And I really feel sorry that he isn't able to experience school like everyone else. My son goes to a center base school. That was my choice. He is a walking medical book. I'm either praying his pre cancer cells can get to the point he is in need of dialysis. So sad because that's the only way my son can surpass your sons needs. Isn't that crazy? That's a crisis. My son has to be either dying or my family has to be unable to care for his needs and we have to give him up to the state. That's insane? I just want this state to wake up and come to the 21st century. For god sake we don't call ESE as the MH kids any more. Connected by MOTOBLUR™ on T-Mobile Re: Re: APD Freeze One of the purpose of the medicaid waiver is to make sure income is not taken into account. On disability I make too much to qualify for my son to get medicaid. I am a stay at home mom, with a child that is home full time as he is on hospital homebound because the schools can't handle him. Every family has their own unique circumstances and I suggest everyone that is in crisis on the waitlist apply using the crisis tool. PCA does NOT use waiver funds, PCA is paid for by medicaid. You do not have to be on the waiver to get PCA. The waiver does provide " babysitters " that is respite. Some children and adults are so severe that parents use the respite worker in their home to watch them just so they can get some household chores done. The purpose of a behavioral assistant is to help implement the plan, if that is not being done, the provider needs to speak up.  Of course there are alot of families who take advantage of the waiver. There are alot of families who take advantage of everything....and alot of families who don't. By the time we got on the waiver it was clear to all that both I and my 11 yo child were on the brink of institutionalization. I've heard all the stories of incredible abuse of the waiver by selfish families and it p**ses me off as much as it does you. We don't happen to be one of those families.Sherry>> I'm sorry sherry but there are a lot out there which take advantage of the waiver. Especially when the family income is not taken in consideration. And the mom is a home stay mom.And asking PCA and behavior assistant to become personal maids or baby sitters. Which is not what they are for.There are people still losing their homes out there.

[Guest guest]

I too have seen medicaid waiver and fraud and the fact is that it's most often by provider agencies most often and only a handful of families. Please families. We have to be there for each other and not let anything divide us. Tallahassee will more than likely respond to us if we are unified. Ven is right in that we can't let this session go by without be heard. Via BlackBerry Sender: sList Date: Wed, 30 Mar 2011 23:28:46 -0000To: <sList >ReplyTo: sList Subject: Re: APD Freeze Of course there are alot of families who take advantage of the waiver. There are alot of families who take advantage of everything....and alot of families who don't. By the time we got on the waiver it was clear to all that both I and my 11 yo child were on the brink of institutionalization. I've heard all the stories of incredible abuse of the waiver by selfish families and it p**ses me off as much as it does you. We don't happen to be one of those families.Sherry>> I'm sorry sherry but there are a lot out there which take advantage of the waiver. Especially when the family income is not taken in consideration. And the mom is a home stay mom.And asking PCA and behavior assistant to become personal maids or baby sitters. Which is not what they are for.There are people still losing their homes out there.

[Guest guest]

PCA is paid through medicaid only for children. Once your disabled "child" is adult you get PCA only through waiver. No waiver - no PCA.

The rest of this email is hard to write and will be hard for some to read.

Re: abuses known and losing houses and the rest of that. Different topics from freeze but Maybe what Catherene talking about is parent who cannot work because they have no supports to pay someone to stay with their special child and so parent without health insurance for self and risk of losing home or apartment. Call APD and parent told not in crisis - (child has medicaid) no requirement for you "parent" to have a job or health insurance. YOU (parent) are not the wait list person. Call back when child on the brink of homeless and then child goes into crisis category and homeless can be placed ANYWHERE - intermediate care facility 100 miles away (institutional slots!) have plenty of "beds" open. I was told to contact FARP or maybe called FARF - association of residential providers and download list of open "slots" in ICFs. There are lots

of them - do you want your child to be removed to an ICF? Most of us do not. This is the real world for many parents struggling with no waiver supports. Call APD that child is homeless risk child being removed. APD is NOT going to pay your mortgage or your rent. About parent's income: not sure what she means except Medicaid only looks at child income and so waiver also does not look at parents financials. Some see that there are very high income wealthy families who have adult children in family home with uncapped monies. Thinking shouldn't they be responsible for some of their child's care? They buy their other kids cars, trips, even downpays on condos for them. But for disabled child they are expecting public supports to pay all? Difficult to consider. But not as difficult is problem knowledge that many parents do "overutilize" their budgets. This

is hard to believe by most, but APD estimated that up to 15% of cost plans are overutilizations for different reasons. One is that in that what was natural supports are now paid supports. One example, grandmother always met school bus and watched grandson till mom or dad got home. Then, child put on waiver and grandmother became provider and is paid to do what she was doing from her heart. Same for adult brother sib who was taking brother to sports games etc. and now HE is on the payroll. Some families have multiple relatives on payroll and some have neighbor or sibs friends who are "teaching" child lawn & pool care by cleaning family pool and doing the yared work. Someone else has provider washing the family cars. You appear to have no idea! This is hard to see by parents with child on waitlist who are told you need to use "natural" supports when they don't see people on waiver

required to use natural supports. The ones they did have they turned into paid supports. And then their are providers who tell other providers (my cousin) that they are expected to do things that they should not be doing. Examples: told to take other child to band practice; take pet to vet, told to go to bank by dad to make deposit for his business he too rushed for meeting/ told to check in on elderly grandparents (pick up some groceries on way for "visit" and straighten out there, ok, grandparents need help but not from waiver funds when others are wait listed with zero dollars). when helping disability individual with his laundry, do all family laundry (she is "learning") same vacuuming and cleaning kitchen. Sorry, but it is true that some providers are like family servants and why not speak up? as you suggest. They are told this is all proper bec client is "learning" to do these things but some of this

things cross the line from services to child to being gov't paid household worker for the family and actually are being paid at the expense of other disabled NOT getting services. But bigger issue of why not speaking up and reporting problem, is that the paid support person has developed a strong feeling for the child and don't want to lose the position and the child therefore. Sadly, some also think they care more about the child than the family since family spends almost no meaningful time with child. What can you say, exasperating. BUT, it is surely the minority of situations and huge FEAR that as these are exposed it will be used to tighten everyone else. This could become popular now the way some who cheat welfare are then used as excuse to cut needed programs because of unfair tainting. Maybe this is why Sherry is p'd off. She may know about these things. Many of us do. We

all should be p'd off about this. This is not just something that eats away at funds that could be used for the unfunded wait listed but this could be something used to excuse for cutting everyone already in programs. This is the way it is. If you do not think so, just ask your providers about what he/she knows from other providers or their own experiences with other families. Be ready to have your eyes opened wide. Thanking Catereine for saying this topic even though many will be shocked and upset. I didn't want to write this but This is a time for facing what the real situations are and how complex it is. Denying the inequalities and pretending things can go on and on without major changes is not possible Especially when the State is not going to allocate more money. The freeze is just step 1.

To: sList Sent: Wed, March 30, 2011 8:02:58 PMSubject: Re: Re: APD Freeze

One of the purpose of the medicaid waiver is to make sure income is not taken into account. On disability I make too much to qualify for my son to get medicaid. I am a stay at home mom, with a child that is home full time as he is on hospital homebound because the schools can't handle him. Every family has their own unique circumstances and I suggest everyone that is in crisis on the waitlist apply using the crisis tool. PCA does NOT use waiver funds, PCA is paid for by medicaid. You do not have to be on the waiver to get PCA. The waiver does provide "babysitters" that is respite. Some children and adults are so severe that parents use the respite worker in their home to watch them just so they can get some household chores done. The purpose of a behavioral assistant is to help implement the plan, if that is not being done, the provider needs to speak up.

Of course there are alot of families who take advantage of the waiver. There are alot of families who take advantage of everything....and alot of families who don't. By the time we got on the waiver it was clear to all that both I and my 11 yo child were on the brink of institutionalization. I've heard all the stories of incredible abuse of the waiver by selfish families and it p**ses me off as much as it does you. We don't happen to be one of those families.Sherry>> I'm sorry sherry but there are a lot out there which take advantage of the waiver. Especially when the family income is not taken in consideration. And the mom is a home stay mom.And asking PCA and behavior assistant to become personal maids or baby

sitters. Which is not what they are for.There are people still losing their homes out there.

[Guest guest]

First of all, I have no choice but to have my child on hospital homebound. My son has been arrested at school previously and charged with felony assault on school officials. I fought with lawyers to have him back in school and a behavior plan implemented. Then they don't follow the plan again and have the police called. I am told by the principal that my son's behavior is not appropriate, or safe and that they will continue to have the police called and him either arrested or baker acted at the officers discretion. Again we are fighting with lawyers, but Lee county never pays for private place and has no appropriate schools. As a parent are you going to leave your child at school to be arrested and placed in the juvenile justice system?

Ahhh but see because of the freeze, my son may not get services. All approvals have stopped. Those on the waiver due to the crisis tool are only on 30 day authorization for services.I understand, I lost my job before I had the waiver, my son and I lived at homeless shelters before the crisis tool was available for the waiver. I still can not work as I have to care for my child. An ICF can be a group home, a group home is not an institution. Also just because someone is approved through the crisis tool does not mean they go into residential care.

Most of the abuse is by PROVIDERS not parents and most people think is abuse is approved for those on CDC+ (such as hiring family members at a lower rate then provider) Everyone need to watch their medicaid statement, in the last year I have found more than $10,000 in approved fraudulent charges that I have reported as my son most certainley did not have his leg amputated.

But the government got the community to do exactly what it wanted. Divide and conquer, pit those on the waitlist against those on the waiver. It really is nice to lobby and work to help those on the waitlist and then be told that I don't understand. Wait, we were on the waitlist until just a few months ago. Hmmm... maybe I do get it?

 

PCA is paid through medicaid only for children.  Once your disabled " child " is adult you get PCA  only  through waiver.  No waiver - no PCA.

The rest of this email is hard to write and will be hard for some to read.

Re: abuses known and losing houses and the rest of that. Different topics from freeze but  Maybe what Catherene talking about is  parent who cannot work because they have no supports to pay someone to stay with their special child  and  so parent without health insurance for self  and  risk of losing home or apartment.  Call APD and parent told not in crisis - (child has medicaid) no requirement for you " parent " to have a job or health insurance.  YOU (parent) are not the wait list person.  Call back when child on the brink of homeless and then child goes into crisis category and homeless can be placed ANYWHERE  - intermediate care facility 100 miles away (institutional slots!) have plenty of " beds " open. I was told to contact FARP or maybe called FARF - association of residential providers and download list of open " slots " in ICFs.  There are lots

of them - do you want your child to be removed to an ICF?  Most of us do not.  This is the real world for many parents struggling with no waiver supports.  Call APD that child is homeless risk child being removed. APD is NOT going to pay your mortgage or your rent.  About parent's income:  not sure what she means except Medicaid only looks at child income and so waiver also does not look at parents financials.  Some see that there are very high income wealthy families who have adult children in family home with uncapped monies.  Thinking shouldn't they be responsible for some of their child's care?  They buy their other kids cars, trips, even downpays on condos for them.  But for disabled child they are expecting public supports to pay all?  Difficult to consider.  But  not as difficult is problem knowledge that many parents do " overutilize " their budgets.  This

is hard to believe by most, but  APD estimated that up to 15% of cost plans are overutilizations for different reasons.  One is that  in that what was natural supports are now paid supports.  One example, grandmother always met school bus and watched grandson till mom or dad got home.  Then, child put on waiver and grandmother became provider and is paid to do what she was doing from her heart.  Same for adult brother sib who was taking brother to sports games etc. and now HE is on the payroll.  Some families have multiple relatives on payroll and some have neighbor or sibs friends who are " teaching " child lawn & pool care by cleaning family pool and doing the yared work.  Someone else has provider washing the family cars.  You appear to have no idea!  This is hard to see by parents with child on waitlist who are told you need to use " natural " supports when they don't see people on waiver

required to use natural supports.  The ones they did have they turned into paid supports. And then their are providers who tell other providers (my cousin) that they are expected to do things that they should not be doing.  Examples: told to take other child to band practice; take pet to vet, told to go to bank by dad to make deposit for his business he too rushed for meeting/ told to check in on elderly grandparents (pick up some groceries on way for " visit " and straighten out there, ok, grandparents need help but not from waiver funds when others are wait listed with zero dollars).  when helping disability individual with his laundry, do all family laundry (she is " learning " ) same vacuuming and cleaning kitchen.  Sorry, but it is true that some providers are like family servants  and  why not speak up? as you suggest.  They are told this is all proper bec client is " learning " to do these things but some of this

things cross the line from services to child to being gov't paid household worker for the family and actually are being paid at the expense of other disabled NOT getting services.  But bigger issue of why not speaking up and reporting problem, is that the paid support person has developed a strong feeling for the child  and  don't want to lose the position and the child therefore.  Sadly, some also think they care more about the child than the family since family spends almost no meaningful time with child.  What can you say, exasperating.  BUT, it is surely the minority of situations and huge FEAR that as these are exposed it will be used to tighten everyone else.  This could become popular now the way some who cheat welfare are then used as excuse to cut needed programs because of unfair tainting.  Maybe this is why Sherry is p'd off. She may know about these things. Many of us do.  We

all should be p'd off about this.  This is not just something that eats away at funds that could be used for the unfunded wait listed  but  this could be something used to excuse for cutting everyone already in programs.  This is the way it is.  If you do not think so, just ask your providers about what he/she knows from other providers or their own experiences with other families.  Be ready to have your eyes opened wide.  Thanking Catereine for saying this topic  even  though many will be shocked and upset.  I didn't want to write this but This is a time for facing what the real situations are and how complex it is.  Denying the inequalities and pretending things can go on and on without major changes is not possible Especially when the State is not going to allocate more money.  The freeze is just step 1.