Re: Fw: Florida - Developmentally disabled face new cuts from the state

[Guest guest]

. Cost is a big thing for our budget. Our entire world is having a major crisis and sadly we are all paying for it in some way or another. Yeah maybe that very rich status are not going to feel it like us. Though the last 5 years the middle class has slowly been disappearing which that means us. The cost of providing services will and always be astronomical for our community because it is one to one. That one to one is what is costing a great deal and honestly the level of service guided by these individuals isn't really skilled. Thank god because then it would cost more. In reality, is like most of the adults out there which have become dependent on staff members, replacing parents out in the real world. So is this really what we want? What they want? We want the real world to come to them but we restrict how much of it we let them have. Are they really independent or are they just free to interact one step above a work station environment? There are a great deal of smart individuals in this state who want to help our kids. Then why hasn't anyone come up with a better plan before? Probably because there was always enough money to go around and no one questioned how much we were spending. Do the math 42 thousand dollars multiply all the adults who are disabled and need a one to one. Thats crazy to know we even spend that much. We are going through some growing pains right now for this community. Believe me I get disgusted to think about our kids at a simulated work station. Its not the 1900s for god sake.The question is can any one come with a better plan? aka enzos mom

----- Forwarded Message -----To: Undisclosed List Sent: Saturday, August 6, 2011 9:46 PMSubject: Florida - Developmentally disabled face new cuts from the state

Florida - Developmentally disabled face new cuts from the state

August 6, 2011 Eve Samples TCPalm

http://www.tcpalm.com/news/2011/aug/06/eve-samples-developmentally-disabled-face-new/

There was a time when we cared for the developmentally disabled in an out-of-sight,-out-of-mind manner.

We shipped them to state institutions and sat them in sheltered workshops.

It wasn't humane, it wasn't cost-effective — and that's why Florida and other states started moving away from that approach in the 1970s.

Ed Kotch fears we are headed back to those days.

Nobody in Tallahassee would ever put it that way, of course, but the numbers tell an alarming tale in the case of Kotch's daughter, .

Before we get to that, a bit about her.

is a 31-year-old who wears her brown hair pulled back in a ponytail. When she is particularly happy, which is often, she claps her hands and her hair swings from side to side.

was born with brain defects that caused major developmental delays. She had a paralyzing stroke when she was 13 months old, and though she recovered enough to start walking, she still cannot read and her speech is severely impaired.

Despite all of that, spends five days a week volunteering at County's Clerk of the Circuit Court office and Jensen Beach-based STS Aviation Group — work that earned her a Jefferson Award last year.

A paid companion accompanies to work while Ed and his wife are at their own jobs, giving their daughter a level of independence that she loves. Her companion, Carolyn Hancock, is covered through a plan that is developed and funded by the state Agency for Persons with Disabilities.

Before 2008, the state covered 's plan for companion services and other care at $42,000 a year.

As of Aug. 1, it has dropped to $18,000, according to Kotch.

"I would like to see how many of our state and local politicians have taken a 57 percent cut in pay," said Ed Kotch, who sits with me on the board of directors of the nonprofit ARC of County. The ARC serves developmentally disabled people.

Ed tried to be flexible. The Kotch family agreed to eliminate services including speech therapy.

But the final straw came Aug. 1, when the Agency for Persons with Disabilities announced it would cut the rate for one-on-one companions from more than $10 an hour to $6.72.

That's less than minimum wage — an amount that companion workers are permitted by federal law to be paid, a spokeswoman for the Agency for Persons with Disabilities told me.

But Ed can't find a competent companion for his daughter who will work for that amount, and needs one-on-one attention when she is working.

He sees the cuts as an attempt to push people like into group settings, where companions can earn higher wages.

"This is how they're putting the smokescreen up," Kotch said.

The Agency for Persons with Disabilities has overspent its budget year after year, as more disabled people have been served while funding stayed flat. The agency was $170 million over its $805 million budget last year, and Gov. Rick responded by slashing provider reimbursement rates April 1. Public outcry prompted him to reverse the order two weeks later.

But as Kotch's case shows, the crisis is far from over.

The recent companion rate cut, which is expected to save the state $17 million, is part of an attempt by APD to stay within its budget at the outset of the year.

"We were told by the Legislature and the governor's office that you are a state agency, and you are expected to abide by state law ... and live within the appropriation," APD spokeswoman Etters said.

Jo Hempel, whose 31-year-old son has autism, is concerned the rate cuts will impact his ability to work. He has a paid job, and he needs the one-on-one companion while he is there.

"It's really hard to find, even at the rates they had, people you can trust your disabled loved one with," said Hempel, who is chief deputy clerk in the office where works.

Then there's the financial impact to the companies that provide companion services. 's companion works with a mom-and-pop business called Pathway to Independence.Jeff Hancock, who operates the business, told me he has lost five out of 13 clients because of rate cuts that APD has implemented in the last two months.

He also lost $1,400 in income during the two weeks that Gov. 's rate cuts were in effect.

"I'm driving a 12-year-old car with a check-engine light on for two years — $1,400 would go a long way for me," Hancock told me.

He hopes his business will stay afloat.

If it doesn't, will Gov. count those lost jobs against the 700,000 he has promised to create?

[Guest guest]

Wow! $42,000 paid per year. That's more than some teachers make. Some of us are unable to get even the $18,000 per year. I am not looking forward to the day the school system have to/supposed to educatemy child. Then what? You're right a work station may be a fit for some but not others. Heaven help all the developmentally disabled.To: sList Sent: Tuesday, August 9, 2011 5:35 PMSubject: Re: Fw: Florida - Developmentally disabled face new cuts from the state

. Cost is a big thing for our budget. Our entire world is having a major crisis and sadly we are all paying for it in some way or another. Yeah maybe that very rich status are not going to feel it like us. Though the last 5 years the middle class has slowly been disappearing which that means us. The cost of providing services will and always be astronomical for our community because it is one to one. That one to one is what is costing a great deal and honestly the level of service guided by these individuals isn't really skilled. Thank god because then it would cost more. In reality, is like most of the adults out there which have become dependent on staff members, replacing parents out in the real world. So is this really what we want? What they want? We want the real world to come to them but we restrict how much of it we let them have. Are they really independent or are they just free to interact one

step above a work station environment? There are a great deal of smart individuals in this state who want to help our kids. Then why hasn't anyone come up with a better plan before? Probably because there was always enough money to go around and no one questioned how much we were spending. Do the math 42 thousand dollars multiply all the adults who are disabled and need a one to one. Thats crazy to know we even spend that much. We are going through some growing pains right now for this community. Believe me I get disgusted to think about our kids at a simulated work station. Its not the 1900s for god sake.The question is can any one come with a better plan? aka enzos mom

----- Forwarded Message -----To: Undisclosed List Sent: Saturday, August 6, 2011 9:46 PMSubject: Florida - Developmentally disabled face new cuts from the state

Florida - Developmentally disabled face new cuts from the state

August 6, 2011 Eve Samples TCPalm

http://www.tcpalm.com/news/2011/aug/06/eve-samples-developmentally-disabled-face-new/

There was a time when we cared for the developmentally disabled in an out-of-sight,-out-of-mind manner.

We shipped them to state institutions and sat them in sheltered workshops.

It wasn't humane, it wasn't cost-effective — and that's why Florida and other states started moving away from that approach in the 1970s.

Ed Kotch fears we are headed back to those days.

Nobody in Tallahassee would ever put it that way, of course, but the numbers tell an alarming tale in the case of Kotch's daughter, .

Before we get to that, a bit about her.

is a 31-year-old who wears her brown hair pulled back in a ponytail. When she is particularly happy, which is often, she claps her hands and her hair swings from side to side.

was born with brain defects that caused major developmental delays. She had a paralyzing stroke when she was 13 months old, and though she recovered enough to start walking, she still cannot read and her speech is severely impaired.

Despite all of that, spends five days a week volunteering at County's Clerk of the Circuit Court office and Jensen Beach-based STS Aviation Group — work that earned her a Jefferson Award last year.

A paid companion accompanies to work while Ed and his wife are at their own jobs, giving their daughter a level of independence that she loves. Her companion, Carolyn Hancock, is covered through a plan that is developed and funded by the state Agency for Persons with Disabilities.

Before 2008, the state covered 's plan for companion services and other care at $42,000 a year.

As of Aug. 1, it has dropped to $18,000, according to Kotch.

"I would like to see how many of our state and local politicians have taken a 57 percent cut in pay," said Ed Kotch, who sits with me on the board of directors of the nonprofit ARC of County. The ARC serves developmentally disabled people.

Ed tried to be flexible. The Kotch family agreed to eliminate services including speech therapy.

But the final straw came Aug. 1, when the Agency for Persons with Disabilities announced it would cut the rate for one-on-one companions from more than $10 an hour to $6.72.

That's less than minimum wage — an amount that companion workers are permitted by federal law to be paid, a spokeswoman for the Agency for Persons with Disabilities told me.

But Ed can't find a competent companion for his daughter who will work for that amount, and needs one-on-one attention when she is working.

He sees the cuts as an attempt to push people like into group settings, where companions can earn higher wages.

"This is how they're putting the smokescreen up," Kotch said.

The Agency for Persons with Disabilities has overspent its budget year after year, as more disabled people have been served while funding stayed flat. The agency was $170 million over its $805 million budget last year, and Gov. Rick responded by slashing provider reimbursement rates April 1. Public outcry prompted him to reverse the order two weeks later.

But as Kotch's case shows, the crisis is far from over.

The recent companion rate cut, which is expected to save the state $17 million, is part of an attempt by APD to stay within its budget at the outset of the year.

"We were told by the Legislature and the governor's office that you are a state agency, and you are expected to abide by state law ... and live within the appropriation," APD spokeswoman Etters said.

Jo Hempel, whose 31-year-old son has autism, is concerned the rate cuts will impact his ability to work. He has a paid job, and he needs the one-on-one companion while he is there.

"It's really hard to find, even at the rates they had, people you can trust your disabled loved one with," said Hempel, who is chief deputy clerk in the office where works.

Then there's the financial impact to the companies that provide companion services. 's companion works with a mom-and-pop business called Pathway to Independence.Jeff Hancock, who operates the business, told me he has lost five out of 13 clients because of rate cuts that APD has implemented in the last two months.

He also lost $1,400 in income during the two weeks that Gov. 's rate cuts were in effect.

"I'm driving a 12-year-old car with a check-engine light on for two years — $1,400 would go a long way for me," Hancock told me.

He hopes his business will stay afloat.

If it doesn't, will Gov. count those lost jobs against the 700,000 he has promised to create?

[Guest guest]

FYI, the $42,000 is the entire cost plan, not just for companion. If the individual was getting 30 hours of companion a week at the old 1:1 rate, it is about ($13.00 per hour) $19,000 per year (agency rate) and the individual providing the service gets 20% less (about $15,000 per yr.($9.50 per hr.) and has to pay for their own gas and expenses. They have to take the individual into the community and do things, not just sit around. The new reduced rate makes the amount the agency gets $13,500 per yr. ($8.65 per hr.) and the individual gets $10,800 per yr. ($6.92 per hr.) and they still have to pay their own gas and expenses. Now that you have the accurate numbers, it looks a lttle differnet doesn't it?

Regards,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

Florida - Developmentally disabled face new cuts from the state

Florida - Developmentally disabled face new cuts from the state

August 6, 2011 Eve Samples TCPalm

http://www.tcpalm.com/news/2011/aug/06/eve-samples-developmentally-disabled-face-new/

There was a time when we cared for the developmentally disabled in an out-of-sight,-out-of-mind manner.

We shipped them to state institutions and sat them in sheltered workshops.

It wasn't humane, it wasn't cost-effective — and that's why Florida and other states started moving away from that approach in the 1970s.

Ed Kotch fears we are headed back to those days.

Nobody in Tallahassee would ever put it that way, of course, but the numbers tell an alarming tale in the case of Kotch's daughter, .

Before we get to that, a bit about her.

is a 31-year-old who wears her brown hair pulled back in a ponytail. When she is particularly happy, which is often, she claps her hands and her hair swings from side to side.

was born with brain defects that caused major developmental delays. She had a paralyzing stroke when she was 13 months old, and though she recovered enough to start walking, she still cannot read and her speech is severely impaired.

Despite all of that, spends five days a week volunteering at County's Clerk of the Circuit Court office and Jensen Beach-based STS Aviation Group — work that earned her a Jefferson Award last year.

A paid companion accompanies to work while Ed and his wife are at their own jobs, giving their daughter a level of independence that she loves. Her companion, Carolyn Hancock, is covered through a plan that is developed and funded by the state Agency for Persons with Disabilities.

Before 2008, the state covered 's plan for companion services and other care at $42,000 a year.

As of Aug. 1, it has dropped to $18,000, according to Kotch.

"I would like to see how many of our state and local politicians have taken a 57 percent cut in pay," said Ed Kotch, who sits with me on the board of directors of the nonprofit ARC of County. The ARC serves developmentally disabled people.

Ed tried to be flexible. The Kotch family agreed to eliminate services including speech therapy.

But the final straw came Aug. 1, when the Agency for Persons with Disabilities announced it would cut the rate for one-on-one companions from more than $10 an hour to $6.72.

That's less than minimum wage — an amount that companion workers are permitted by federal law to be paid, a spokeswoman for the Agency for Persons with Disabilities told me.

But Ed can't find a competent companion for his daughter who will work for that amount, and needs one-on-one attention when she is working.

He sees the cuts as an attempt to push people like into group settings, where companions can earn higher wages.

"This is how they're putting the smokescreen up," Kotch said.

The Agency for Persons with Disabilities has overspent its budget year after year, as more disabled people have been served while funding stayed flat. The agency was $170 million over its $805 million budget last year, and Gov. Rick responded by slashing provider reimbursement rates April 1. Public outcry prompted him to reverse the order two weeks later.

But as Kotch's case shows, the crisis is far from over.

The recent companion rate cut, which is expected to save the state $17 million, is part of an attempt by APD to stay within its budget at the outset of the year.

"We were told by the Legislature and the governor's office that you are a state agency, and you are expected to abide by state law ... and live within the appropriation," APD spokeswoman Etters said.

Jo Hempel, whose 31-year-old son has autism, is concerned the rate cuts will impact his ability to work. He has a paid job, and he needs the one-on-one companion while he is there.

"It's really hard to find, even at the rates they had, people you can trust your disabled loved one with," said Hempel, who is chief deputy clerk in the office where works.

Then there's the financial impact to the companies that provide companion services. 's companion works with a mom-and-pop business called Pathway to Independence.Jeff Hancock, who operates the business, told me he has lost five out of 13 clients because of rate cuts that APD has implemented in the last two months.

He also lost $1,400 in income during the two weeks that Gov. 's rate cuts were in effect.

"I'm driving a 12-year-old car with a check-engine light on for two years — $1,400 would go a long way for me," Hancock told me.

He hopes his business will stay afloat.

If it doesn't, will Gov. count those lost jobs against the 700,000 he has promised to create?

[Guest guest]

It does, Ven thank you. Just a note though - many parents have supplemented money for any outings - gas etc or provided other incentives to keep good assistants. It is very difficult to retain a competent assistant. Under the current medicaid rules - the pca is not to provide assistance for community instruction, including doctor visits. I know because this was the issue in the hearing. There are newer guidelines coming out which will limit pca services even more - fyi. The fair hearing/denial of services is a nightmare and I would like to know what the Autism Society is doing to help with this. I have worked with Disability rights and even though they try to help with technical assistance - we parents have more & tougher battles ahead with the cuts in APD. Is

the autism society jumping in with attorneys, letters? anything? To: sList Sent: Wednesday, August 10, 2011 5:50 PMSubject: Re: Fw: Florida - Developmentally disabled face new cuts from the state

FYI, the $42,000 is the entire cost plan, not just for companion. If the individual was getting 30 hours of companion a week at the old 1:1 rate, it is about ($13.00 per hour) $19,000 per year (agency rate) and the individual providing the service gets 20% less (about $15,000 per yr.($9.50 per hr.) and has to pay for their own gas and expenses. They have to take the individual into the community and do things, not just sit around. The new reduced rate makes the amount the agency gets $13,500 per yr. ($8.65 per hr.) and the individual gets $10,800 per yr. ($6.92 per hr.) and they still have to pay their own gas and expenses. Now that you have the accurate numbers, it looks a lttle differnet doesn't it?

Regards,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

Florida - Developmentally disabled face new cuts from the state

Florida - Developmentally disabled face new cuts from the state

August 6, 2011 Eve Samples TCPalm

http://www.tcpalm.com/news/2011/aug/06/eve-samples-developmentally-disabled-face-new/

There was a time when we cared for the developmentally disabled in an out-of-sight,-out-of-mind manner.

We shipped them to state institutions and sat them in sheltered workshops.

It wasn't humane, it wasn't cost-effective — and that's why Florida and other states started moving away from that approach in the 1970s.

Ed Kotch fears we are headed back to those days.

Nobody in Tallahassee would ever put it that way, of course, but the numbers tell an alarming tale in the case of Kotch's daughter, .

Before we get to that, a bit about her.

is a 31-year-old who wears her brown hair pulled back in a ponytail. When she is particularly happy, which is often, she claps her hands and her hair swings from side to side.

was born with brain defects that caused major developmental delays. She had a paralyzing stroke when she was 13 months old, and though she recovered enough to start walking, she still cannot read and her speech is severely impaired.

Despite all of that, spends five days a week volunteering at County's Clerk of the Circuit Court office and Jensen Beach-based STS Aviation Group — work that earned her a Jefferson Award last year.

A paid companion accompanies to work while Ed and his wife are at their own jobs, giving their daughter a level of independence that she loves. Her companion, Carolyn Hancock, is covered through a plan that is developed and funded by the state Agency for Persons with Disabilities.

Before 2008, the state covered 's plan for companion services and other care at $42,000 a year.

As of Aug. 1, it has dropped to $18,000, according to Kotch.

"I would like to see how many of our state and local politicians have taken a 57 percent cut in pay," said Ed Kotch, who sits with me on the board of directors of the nonprofit ARC of County. The ARC serves developmentally disabled people.

Ed tried to be flexible. The Kotch family agreed to eliminate services including speech therapy.

But the final straw came Aug. 1, when the Agency for Persons with Disabilities announced it would cut the rate for one-on-one companions from more than $10 an hour to $6.72.

That's less than minimum wage — an amount that companion workers are permitted by federal law to be paid, a spokeswoman for the Agency for Persons with Disabilities told me.

But Ed can't find a competent companion for his daughter who will work for that amount, and needs one-on-one attention when she is working.

He sees the cuts as an attempt to push people like into group settings, where companions can earn higher wages.

"This is how they're putting the smokescreen up," Kotch said.

The Agency for Persons with Disabilities has overspent its budget year after year, as more disabled people have been served while funding stayed flat. The agency was $170 million over its $805 million budget last year, and Gov. Rick responded by slashing provider reimbursement rates April 1. Public outcry prompted him to reverse the order two weeks later.

But as Kotch's case shows, the crisis is far from over.

The recent companion rate cut, which is expected to save the state $17 million, is part of an attempt by APD to stay within its budget at the outset of the year.

"We were told by the Legislature and the governor's office that you are a state agency, and you are expected to abide by state law ... and live within the appropriation," APD spokeswoman Etters said.

Jo Hempel, whose 31-year-old son has autism, is concerned the rate cuts will impact his ability to work. He has a paid job, and he needs the one-on-one companion while he is there.

"It's really hard to find, even at the rates they had, people you can trust your disabled loved one with," said Hempel, who is chief deputy clerk in the office where works.

Then there's the financial impact to the companies that provide companion services. 's companion works with a mom-and-pop business called Pathway to Independence.Jeff Hancock, who operates the business, told me he has lost five out of 13 clients because of rate cuts that APD has implemented in the last two months.

He also lost $1,400 in income during the two weeks that Gov. 's rate cuts were in effect.

"I'm driving a 12-year-old car with a check-engine light on for two years — $1,400 would go a long way for me," Hancock told me.

He hopes his business will stay afloat.

If it doesn't, will Gov. count those lost jobs against the 700,000 he has promised to create?