ADAPT action in DC 4/27 and 4/28/2009

Adapt takes Constitution Ave. Shadow of Capitol

April 27,2009 Chained for freedom at the White HouseArrests begin

Wall of capitol police ready to make arrests

Three State School Residents Escape, Get Caught

link to article

Updated: April 23, 2009 09:19 PM

CORPUS CHRISTI - Despite tightened security, three residents managed to escape from the Corpus Christi State School.

One resident didn't make it past the fence, but two others wandered for several miles before they were spotted.

At least one of the residents has a history of assault, however, all three residents are back inside the state school Thursday night.

Each individual cases will be evaluated, as well as the security situation at the campus.

An employee thought he saw someone leave, so they did a head count and realized that three were missing. One was immediately found inside the fence, but the other two were spotted at Port and Agnes an hour later about two and a half miles away by a state school employee.

At that point, one of them gave up but the other ran into Rose Hill Cemetery. Police were called out, but they couldn't track him down.

State officials said he eventually turned up at Cole Park and by 1:30 a.m. all were back at the campus. The state school is not a jail but it's obviously intended to be a secure area for the residents that are placed there by a court.

Following the investigation into fight clubs here at the campus, more staff was added to provide better supervision and security.

Wednesday night's incident will lead to another re-evaluation of whether the amount of security and staff is adequate.

"They just look at all the, kind of, internal workings whenever any type of incident occurs on campus. And then, if there is an allegation of any sort that there was staff neglect involved, then that would be reported to the Texas Department of Family and Protective Services for them to investigate as well," Cecilia Federov said.

The man who didn't give up when confronted by a state school employee near Rose Hill Cemetery was 42-year-old Martin Gutierrez.

He was arrested for assault back in 2005, but found incompetent to stand trial last March and sent to the Corpus Christi State School.

One other troubling part of the story Wednesday night is that according to Corpus Christi police, they weren't notified about the escape until about an hour after the three were found to be missing.

They were only called when one of them refused to give himself up.

Online Reporter: Bart Bedsole

Editorial: State school closure is overreaction

link to article

Friday, April 24, 2009

In an ideal world, there’d be no need for a place like the Mexia State School. All children would be healthy and whole, and they would grow to adulthood that way. This isn’t an ideal world.

OK, then: In a close-to-ideal world in which children have severe mental and physical disabilities, we’d have the resources to tend to them all in their homes or in intimate settings connected with their communities. We don’t have that world, either.

So, we need — and will continue to need — places like the Mexia State School. These institutions can have their problems such as those alarming ones confirmed by state investigations: stretched staff being neglectful, and some poorly chosen staffers being reckless and abusive. Texas needs a heightened investment in staff and better oversight.

As serious as these revelations are, they don’t in any way merit an overreaction that shuts down state schools. The problems call for giving them the resources to do what’s best.

A bill gaining traction in Austin is such an overreaction. It would close state schools — which ones we can’t know — in favor of community-based solutions like group homes.

Some parents of state school clients convincingly urge against this.

Those parents are satisfied with where their severely disabled children have been long-term residents. They know that the expense of providing for those individuals in group homes is prohibitive. And Texas has never been one to spend freely.

Consider unto itself the space that a group home would need to deal with the equipment that transports an individual like Mexia State School resident Julie Browder, daughter of Frank and Jacque Beavers of China Spring. She must be transported out of her bed with a lift. Hallways must be wide to get her to therapy. The Beavers say Mexia State School, her home of 33 years, is the best place for her. Who in Austin is fit to say it is not?

The Beavers agree that some of the people in state schools would be well-served in community-based residences. But those places don’t offer the round-the-clock supervision required for some people under the state’s care.

It would be reasonable and commendable, based on the desires on individual families, to move more clients into community care. If demand dictates and more clients are so relocated, state schools can and should be downsized.

That doesn’t mean we close state schools, though. The Beavers’ daughter shouldn’t have to go anywhere after all these years. It’s her home. They tended to her at their home for 12 years until it became too onerous. Mexia State School was the place to which her parents turned in a not-ideal world.

Parents of Texas state school residents argue against closure sought by advocates for disabled

Link to article

12:00 AM CDT on Friday, April 17, 2009

By EMILY RAMSHAW / The Dallas Morning News 
eramshaw@dallasnews.com

AUSTIN – Advocates for closing Texas' state schools for the mentally disabled and parents committed to keeping them open sparred at the Capitol on Thursday as lawmakers debated nearly a dozen measures to overhaul the care system.

Opponents of Texas' state institutions, which have come under fire for widespread abuse and neglect, endorsed bills that would move some state school residents into independent living and community-based care. Many of these bills would lead to the eventual closure of some state institutions.

"Continuing to operate like we have is like treating a heart attack with aspirin," said Colleen Horton, public policy director for the University of Texas Center for Disability Studies. "It may help you make it through the next few hours or the next few days, but it isn't going to solve the real problems."

Longtime state school parents made an emotional plea to keep the system intact, saying it is safer and better monitored than community group homes and private care facilities.

"There's a perception that community group homes are somehow superior to the state schools," said Ruth Esgar of Dallas, whose daughter has lived and thrived in the Denton State School for nearly four decades. "Well, I've shopped around. In a group home, my daughter would be isolated, would not have the programs or services she does now."

The measures being debated Wednesday call for the resizing of the state school system in favor of community living options.

One would create a plan to reduce the state school population dramatically and close several schools over the next eight years. Another would move 500 people from the state schools by 2011 and spend half a million dollars bolstering Texas' community care system. Two others would devise ways to close state schools – either by appointing an independent board to do it, or allowing an agency commissioner to make the call.

Lawmakers in favor say it's the cost-effective and humane thing to do. They say receiving care in the community is not only safer and less restrictive than living in an institution, but cheaper for the state.

But opponents dispute that, saying that when federal matching dollars are considered, the cost to the state is little more in a state school than it is in a community setting.

Lawmakers weigh closing some state schools

But some parents beg Legislature not to close facilities.

By Corrie MacLaggan
AMERICAN-STATESMAN STAFF
Friday, April 17, 2009

More than a decade after Texas last closed any state institutions for people with mental disabilities, lawmakers are weighing proposals that seek to cut the number of the facilities without creating a political firestorm.

But it was clear from testimony Thursday in a standing-room-only hearing before a Senate panel that the Legislature won't be able to downsize or close the institutions known as state schools without passionate opposition from residents' families.

For Denton State School parent Stephen Gersuk, his 29-year-old son's move from a group home to Denton State School meant a change "from watching TV and doing jigsaw puzzles to actually having a community."

For those more medically fragile than his son, "removal from a state school to a group home is state-sponsored, slow-motion Russian roulette," Gersuk told the Senate Committee on Health and Human Services.

The debate that played out before both that panel and the House Committee on Human Services comes as Texas' state schools are under scrutiny from the U.S. Department of Justice, which reported in December that the facilities fail to protect residents.

And in March, Corpus Christi police said that employees of the state school there had been caught on video organizing fights among residents.

"It's hard to understand why we wouldn't be more embarrassed, that we'd want to do something," said Linda Parrish of the Texas A&M University Center on Disability and Development.

Parrish spoke favorably of a measure by Sen. Eliot Shapleigh, D-El Paso, to create an independent authority to evaluate whether any state schools should close and to make recommendations.

Shapleigh compared his proposal to the process of closing military bases — in both cases, he said, many agree there should be fewer, but no one wants his or her local facility to close.

"What we have is a political stalemate here," he said.

Of the nearly 5,000 Texans who live at state schools, Shapleigh said, perhaps 3,000 might be better served in community settings. Though Senate Bill 1407 doesn't mandate closure, Shapleigh said it's likely his measure would lead to that.

Another proposal before the House and Senate panels does mandate closure of some state schools. The proposal by Sen. Rodney Ellis, D-Houston, and Rep. Patrick Rose, D-Dripping Springs — which does not specify which state schools would close — would also reform the entire system of services for Texans with mental disabilities.

The committees did not vote on the closure measures Thursday. The Senate has already approved a proposal — designated an emergency by Gov. Rick Perry — that would add an independent ombudsman for state schools; the House is considering such legislation.

For advocate Bob Kafka, the closure debate is misguided. His group, Adapt of Texas, seeks to move people from institutions into community programs, which now have long waiting lists.

"The debate has become about the buildings, not the people," Kafka said. "Why are we protecting buildings?"

cmaclaggan@statesman.com; 445-3548

State schools bills get Senate hearing

link to article

By JIM VERTUNO Associated Press Writer © 2009 The Associated Press

April 16, 2009, 5:23PM

AUSTIN, Texas — The population of Texas' institutions for the mentally disabled could be slashed to 3,000 over the next few years and some of them could be closed under a series of bills heard by a Senate committee on Thursday.

The debate over whether to close some of the institutions known as state schools has been fueled by reports of abuse and neglect and criminal allegations that some residents were forced to fight.

Advocates for the mentally disabled have called on Texas to close facilities or at least stop admissions. They are running into fierce opposition from some families of residents who say the schools offer the best treatment and care for their loved ones.

"This feels like an attack on state school families today," said Susan Payne, vice president of the Parent Association for the Retarded of Texas and a defender of the state schools. Her 47-year-old sister has profound retardation and lives in the Denton State School.

None of the bills before the Senate Health and Human Services Committee targeted specific schools for closure. Instead, they offered different scenarios of how the state would determine if any should be shuttered.

Texas has about 5,000 residents living in 13 state schools. Many of the residents are severely disabled.

Critics of the system say the state is stuck in an era when the mentally disabled were hidden away in large, impersonal facilities far from relatives and communities.

"We are out of whack. We are out of balance," said Dennis Borel, executive director of the Coalition of Texans with Disabilities.

There have been numerous problems in the current system.

A 2008 Justice Department federal report cited negligent and abusive care that violated residents' civil rights and cited 53 deaths linked to preventable conditions. More than 800 workers have been fired or suspended for mistreating patients since 2004.

Last month, several staff members at the Corpus Christi campus were charged with staging "fight club"-type bouts and forcing mentally disabled residents to fight.

Gov. Rick Perry has declared fixing problems at the state schools a legislative emergency. The Senate last month approved safeguards designed to improve care and oversight and the House is considering similar bills.

Putting up security cameras and improving staff training is almost universally welcomed. The idea of closing some state schools fuels a much more emotional debate.

Sen. Rodney Ellis, D-Houston, is the author of a bill that would reduce state school populations by 500 by Sept. 1, 2011, and to a total of 3,000 by 2013.

Ellis' bill would also require the Department of Aging and Disability Services to identify 1,500 residents who could be moved into community-based care by 2013. If the state agency can meet those goals, Ellis' plan is to spend nearly $500 million in federal and state money on community care.

Ellis has called the findings in the Justice Department report "horrific atrocities" and warned Texas could be facing a federal lawsuit if lawmakers don't act.

But Payne said many state schools families have gone through community settings and ultimately chose the state school setting.

"I don't think the advocacy groups care anything about the people at the state schools," Payne said. "How can they care more than we do?"

The committee was expected to leave the bills pending without a vote Thursday night.

___

The Senate state school closure bills are SB336, SB1060, SB1407 and SB2360.

Lawmakers to weigh state school closure

link to article

By Corrie MacLaggan | Wednesday, April 15, 2009, 06:23 PM

Tomorrow, committees in both the Texas Senate and House are expected to consider a variety of bills related to state institutions for Texans with mental disabilities.

Among those are proposals that would close some of the 13 institutions known as state schools.

The Senate Committee on Health and Human Services is set to consider a measure by Sen. Rodney Ellis, D-Houston, that would require closing some institutions and reforming the entire system of services for Texans with disabilities.

The measure, Senate Bill 1060, does not designate which institutions - or how many - would close. Instead, it calls for state officials to heed recommendations of a steering committee that would consist of lawmakers, state school employees and state school residents and their families.

The House version of Ellis’ proposal is expected to be considered by the Committee on Human Services. Rep. Patrick Rose, D-Dripping Springs, the panel’s chairman, is the author of that measure, House Bill 1589.

The Senate panel will also take up Senate Bill 336 by Bob Deuell, R-Greenville, which would give the head of the Health and Human Services Commission — rather than just the Legislature — the authority to close state schools. But it doesn’t mandate any closure. Neither does Senate Bill 1407 by Sen. Eliot Shapleigh, D-El Paso, which would create a panel to evaluate whether any state schools should close and make recommendations to the Legislature.

Meanwhile, some major state school legislation that does not involve closure is already working its way through the Capitol. The Senate has passed a measure — Senate Bill 643, designated emergency legislation by Gov. Rick Perry — that would create an ombudsman for state schools and put video surveillance in common areas. A companion to that, House Bill 1317, which would also increase oversight of community homes and revamp abuse and neglect investigations, has been approved by the Human Services Committee.

State schools — home to nearly 5,000 Texans — are under scrutiny by the U.S. Department of Justice, which reported in December that the institutions fail to protect residents from harm.

Tomorrow, the Senate committee meets at 9 a.m. in E1.016 and reconvenes after the full Senate meets. The House committee convenes in room E2.036 after the full House meets.

a call to action!

HB 1589 by Rep. Rose and SB 1060 by Senator Ellis will be heard in the House Human Services Committee and the Senate Health and Human Services Committee this Thursday, April 16th. These bills are companion bills which means they are exactly the same. The exact time of these bill will be heard is difficult to determine at this time. NOW IS THE TIME TO ACT.  Please contact the list of Committee Members on the house and senate committeesrequesting their support of these bills.  We must blitz these folks beginning this Monday.  

Bill Summary:
HB 1589 and SB 1060 call for a long term care reform through the development of a strategic plan to:
*  Create a system of services based on need not disability through self determination and consumer direction
*  Increase monitoring and accountability of community services and supports
*  Create a Steering Committee to close and consolidate some state institutions as the population decreases over an 8 year period
*  Redirect resources from state institution closures to fund thewaiting lists.
This is an amazing bill and will carefully and judiciously put a plan in place to bring more equity to the provision of long term servicesfor Texans with disabilities.  This plan calls for a Strategic Plan to look at many, many issues including consolidation of state institutions.  Although there are other good bills out there regarding reform, HB 1589 and SB 1060 have a vision of comprehensive reform. These bills could set in motion a paradigm shift that will look to fund the waiting lists with existing resources by closing some of the state institutions.  This bill is fiscally sound and speaks to maintaining the facilities needed to provide services for those who choose to remain in a state institution while shifting resources through closure of the facilities no longer needed. 

 

When you call or email, here are some suggested talking points:
*.  I need your support of this bill (SB 1060 or HB 1589) to bring equity and real choice to people with disabilities and where they would like to live.  
*   Texans with disabilities can immediately go into an institution which is their choice, however those on waiting lists do not have a choice but to WAIT.  This is not a real choice
*  Please protect the CHOICE of those on waiting lists to live in the community
*  WE need a long range strategic plan to re-balance long term care by consolidating the state institutions we no longer need and re-directing funds to the waiting lists.
*  We need a system that provides services based on needs not disability labels.
*  We need to make sure that community services are exceptional and accountable.
*  We need you to know that community services are less expensive than institutional care as evidenced by the Legislative Budget Board report.
*  We need you to care about the 88,000 people waiting with as much passion as you care about those living in institutions.
*  Will you support this bill?

Senate Health and Human Services Committee Members (SB 1060)
Senator Nelson, Chair 512-463-0112jane.nelson@senate.state.tx.us
Senator Deuell, Vice Chair 512-463-0102bob.deuell@senate.state.tx.us
Senator Huffman 512-463-0117 joan.huffman@senate.state.tx.us
Senator Nichols 512-463-0103 robert.nichols@ senate.state.tx.us
Senator Patrick 512-463-0107 dan.patrick@senate.state.tx.us
Senator Shapleigh 512-463-0129eliot.shapleigh@senate.state.tx.us
Senator Uresti 512-463-0119 carlos.uresti@senate.state.tx.us
Senator West 512-463-0123 royce.west@senate.state.tx.us
Senator Zaffirini 512-463-0121 judith.zaffirini@senate.state.tx.us

House Human Service Committee Members (HB 1589)
Rep. Rose, Chairman 512-463-0647patrick.rose@house.state.tx.us
Rep. Herrero, Vice Chairman 512-463-0462abel.herrero@house.state.tx.us
Rep. Darby 512-463-0331 drew.darby@house.state.tx.us
Rep. Elkins 512-463-0722 gary.elkins@house.state.tx.us
Rep. Hernandez 512-463-0614 ana.hernandez@house.state.tx.us
Rep. Hughes 512-463-0271 bryan.hughes@house.state.tx.us
Rep. Legler 512-463-0460 ken.legler@house.state.tx.us

Rep. Naishtat 512-463-0668 elliott.naishtat@house.state.tx.us
Rep. Walle 512-463-0924 armando.walle@house.state.tx.us

If you live in one of these legislators districts, please let them know that you are a constituent from their district. Also, be direct and brief and add your own personal story into the mix.  Please carve out some time to make these calls and/or emails.  It is critical to the success of the pushing these bills through the process. 

"safety" measures being implemented at state institutions.

Corpus Christi aftershock leads to safety measures for state schools

Just thought you'd like to see some photos from Abilene State "School"

By Brian Bethel (Contact)
Saturday, April 11, 2009

Abilene's State School -- and others throughout the state -- will get security cameras installed for resident safety, while the facility's employees will soon need to wear identifying vests to clearly mark them as such.

The changes are part of efforts by state schools throughout Texas in the wake of a broad federal investigation into abuse, neglect and conditions at the facilities statewide.

Additionally, unannounced night visits continue at the facilities, said Texas Department of Aging and Disability Services spokeswoman Laura Albrecht, as part of the facilities' efforts to make certain residents are receiving proper care.

Video cameras will not be in some areas, such as restrooms, to make certain the privacy of residents is maintained, Albrecht said.

"We work where they live," she said.

But Albrecht said the cameras, which will initially be installed at the Corpus Christi State School and from there be distributed throughout the state, would provide a greater level of safety and well-being for the 4,600 state school residents at 13 facilities in Texas.

"When we have things that occur at state schools, those improvements can be made across the board," she said.

Eleven employees have either left the Corpus Christi State School or have been fired over orchestrated fights between residents, The Associated Press recently reported.

The fights, involving developmentally disabled residents, were recorded on a cell phone camera on 16 days between late 2007 and early this year. Six of the employees face criminal charges over the mistreatment, which involved at least 16 state school residents.

Albrecht did not have a figure for the total cost of the camera program.

The vests will allow school employees to easily recognize one another, be recognized by visitors, and ideally instill a further sense of professionalism among school staff, she said.

"We have name tags, but those might be obstructed from a distance," she said.

Albrecht said she did not have a timetable for the garments to be implemented in Abilene.

After the incident in Corpus Christi unannounced visits have been conducted by school executive teams.

"We'll do those as long as it takes to ensure the safety and well-being of residents," she said. "It's a serious matter for the entire system."

Albrecht said that while incidents such as those at Corpus Christi were frustrating on multiple levels, "improvements can only bring good things to us."

A proposal to protect residents of Texas' state schools for the disabled from abuse won unanimous approval in a House committee on Tuesday, the AP reported.

State Rep. Patrick Rose's bill, which was voted out of the House Human Services Committee and will next head to the full House, would establish a state school ombudsman, a toll-free abuse hot line, in addition to requiring video surveillance cameras at all 13 state school facilities.

It would also require all criminal abuse allegations to be handled by an Office of the Inspector General.

A similar state school safety bill, earmarked by Gov. Rick Perry as priority legislation, passed the Senate last month.

Rose has filed other legislation proposing overhauls to the state school system by closing several institutions over the next decade. That measure, which is far more controversial, has so far taken a back seat to the safety bill, but Rose said he'll bring it up in committee next week.

State schools are in general seeing fewer enrollments as opportunities in the community proliferate, Albrecht said Friday. Residents and their families have several choices, which include living at the school, living with family, or living in a group home, she said. Each year, residents, family members and guardians review options are available throughout the community, she said.

Currently, just shy of 500 residents live in Abilene's State School. The school currently employs 1,325 out of 1,389 total positions.

Mentally retarded Texas teen serving 100-year prison term for sex assault of boy

He admitted assaulting 7-year-old, but his retardation was not considered

By Howard Witt | Tribune correspondent

April 6, 2009

HOUSTON — The crime Aaron Hart confessed to was undeniably repellent.

Last September, the 18-year-old man was charged with sexually assaulting a 7-year-old neighbor boy behind a tool shed in the small east Texas town of Paris. A relative of the victim said she walked outside and saw Hart with his pants pulled down, standing next to the boy.

Police read Hart his Miranda rights and he quickly admitted his guilt. On Feb. 11, Hart's court-appointed attorney entered guilty pleas to each of five related felony counts, a jury recommended multiple sentences and a judge then ruled that the prison terms be served consecutively, for a total of 100 years.

That might have been the end of Cause No. 22924 in the 6th Judicial District Court of Lamar County, Texas—just another dismal criminal case on the docket of an obscure town.

Except that now, less than two months after Hart was sentenced, every court official who had a hand in the case seems to agree that he doesn't really belong in prison for what amounts to the rest of his life.

That's because Hart is profoundly mentally retarded. He has an IQ of 47, and his parents say he functions at the level of a 9-year-old. The boy he confessed to molesting is mentally retarded as well.

What's more, the judge and the jury never heard any expert testimony about Hart's diminished mental functioning, his capacity to understand his Miranda rights or his ability to assist in his own defense, because his defense attorney never subpoenaed any experts.

And since he has been in jail, Hart himself has been repeatedly raped, according to his parents. The first assault, allegedly by an inmate who is serving a far shorter sentence of just 8 years for sexual indecency with a child, so disturbed the alleged rapist's mother that she called Hart's parents to apologize.

"I have nightmares thinking about Aaron in prison and how he is going to survive in there," said Robert Hart, Aaron's 70-year-old father. "He's the type of kid who his whole life people beat him up, took stuff from him, and he wouldn't defend himself. He can't read or write. He can't hardly talk."

Hart's complex case is threatening to once again bring unwelcome outside scrutiny to the functioning of the criminal justice system in Paris.

The town of 26,000 drew national civil rights protests in 2007 following a Tribune report contrasting the judicial treatment of a 14-year-old black girl, who was sentenced to up to 7 years in youth prison for shoving a hall monitor at her high school, with the treatment of a 14-year-old white girl, who was given probation for the more serious crime of arson. More racial tensions erupted last year after the slaying of a 24-year-old black man, allegedly at the hands of two whites.

This time, though the issues are not racial—both Hart and his victim are white—black civil rights leaders in Paris are still advocating on Hart's behalf, because of their concerns that he was not treated fairly by the local justice system.

A spokesman for the local prosecutor, Gary Young, acknowledged that more serious sexual offenders have received much shorter sentences.

"You don't want to send [Hart] to prison for life, but you cannot put him back on the street and worry about what he may do to some other kid," Allan Hubbard, victim's advocate for the district attorney, told the local newspaper, the Paris News. "Speaking for myself and not for the district attorney's office, this illustrates the need for some system between probation and life in prison for someone like this."

Hart's court-appointed defense attorney, Ben Massar, said he had recommended that Hart plead guilty only because he thought his client would be sentenced to probation.

"To me, this was a punishment case," Massar said. "And usually, in order to gain the benefit of more lenient punishment, like the probation we were hoping for, juries and judges like it when people plead guilty and take responsibility for their actions."

The judge who stacked Hart's prison terms to run consecutively for 100 years, Eric Clifford, said he's still agonizing over his decision, which was driven by his concern that Hart poses a danger to society.

"It was a sad situation. I was about to cry. The jury was crying," Clifford said. "Everybody looked at everybody like, 'What the hell do we do?' The only option we were presented was prison. We don't have any facilities in the state of Texas for any type of care for somebody like that. That's the problem. It's a terrible problem. I don't know what you do with him other than what we did."

On Tuesday, Hart's newly appointed appellate attorney is scheduled to go before Clifford with a motion seeking a new trial on the grounds that Hart could not have understood any of the legal proceedings for his arrest, guilty plea and sentencing.

Clifford sounded like he's inclined to grant the motion. "I approved [the appellate attorney] to hire all the experts he wanted on competency," he said. "I said, 'Whatever you need moneywise, I will sign the order.' If they can work something out on that appeal, I'm not going to be hard on them."

hwitt@tribune.com

one of the problems with a 10-year waiting list for community services

Cedar Hill boy's story sparks hope, skepticism in autism community

1:01 AM CDT on Sunday, April 5, 2009

By JESSICA MEYERS / The Dallas Morning News
jmeyers@dallasnews.com

The twiggy boy who greets strangers at his Cedar Hill home with a handshake and an impish grin bears no resemblance to the toddler who shied away from contact, screamed when he had to walk down the stairs and spent hours staring at the ceiling fan.

MELANIE BURFORD/DMN

After her son Roman, now 7, was diagnosed with autism, Elizabeth Scott designed a treatment plan and worked with him 10 hours a day to overcome the disorder.

View larger Photography Photo store

Roman Scott's cheerfully innocuous disposition belies the whirlwind he's stirring in autism circles. He's the subject of his mother's book, which claims he overcame the disorder after her intensive 2 ½ -year training program.Raindrops on Romanwas released this month in conjunction with Autism Awareness Month.

On one level, Elizabeth Scott's account has stoked existing controversy among autism experts who question whether situations like Roman's are a promising development or a case of false hope. But it also reveals how the state's limited services have forced parents into the unwitting role of therapist, caretaker and healer.

Texas is "on the bottom of the totem pole in terms of resources," said Michelle Guppy, who runs Texas Autism Advocacy, an online network intended to help parents navigate the state's bureaucracy.

Her 15-year-old autistic son waited eight years before he received services from the state. By that time, the family had gone $60,000 into debt and had yanked him out of therapy.

"I could help one son now and that takes away college for the other and I couldn't do that," said Guppy, who applauds the book's inspirational tone and instructive suggestions. "Who knows – he could have been one of those recovered kids."

Range of disorders

The Texas Health and Human Services Commission estimates that about 50,000 Texas children have a disorder related to autism.

Few receive the same daily attention as Roman, who was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified at 18 months and autism at 3 years old. Both fall within the umbrella of autism spectrum disorders, with PDD-NOS considered milder. There are five types, which range from mild to severe and often involve problems with social interaction, appropriate behavior, speech development and repeated compulsive actions.

The state-administered Early Childhood Intervention (ECI) program treats about 60,000 children with disabilities and developmental delays up to 3 years of age. Individual school districts take over with special education programs from age 3, but both systems have a shortage of professionals and inconsistent services.

Some children who have delayed speaking problems may only see a speech therapist twice a month, unlike in California, where regional centers offer a range of services to parents of autistic children. In Texas, parents wait up to 10 years for Medicaid programs that offer aid to people with mental disabilities.

The Texas Legislature passed a law two years ago mandating that insurance companies cover autism-related services for children between ages 3 and 5, but the coverage is often limited. Children often need therapy reinforced beyond this point, and that can cost upwards of $50,000 a year and is generally out-of-pocket.

Unlike states such as California and Indiana, Texas has no central autism resource center. Parents are left relying on each other to find out what's available.

'People need to know'

That's largely what motivated Scott to write the memoir.

"If there is a story of recovery and this is it, then parents need to know about it," she said, as 7-year-old Roman alternated between building his Lego city and watching Tom and Jerry in the living room.

Scott, who has a master's in elementary education, said she had to try something as she watched Roman choke on his food, churn his hands in circles, throw tantrums at the sight of a camera, smack the television every morning or fight the sensation of a toothbrush.

"I needed to work all day to keep him from retreating into his own world," she said. "I ran the Boston Marathon, and that was cake compared to this."

Frustrated with only two hours a week of ECI therapy, she stopped working and dedicated herself to re-training her son. Her husband continued to work nights as a computer analyst for J.C. Penney.

She turned her sitting room into a work space with shoe-lacing activities and puzzles for fine motor skills, word charts for language development, and a spot for timeout. The "skills and drills" took at least 10 hours a day, from songs at breakfast to spelling in the bathtub at night.

Three months into the regime, Roman started talking. Then the recurring laps around the house stopped. Slowly, he started responding to the reading drills. By 4, he tested out of special education.

Roman's altered behavior did not go unnoticed.

"He has far surpassed any of the other kids I have ever seen," said Paige Garza, his preschool teacher and a neighbor who has witnessed all of Roman's stages. "Now he's a grown man in a little person's body. If I had met him today, I would never believe it."

She cited Roman's progress as her impetus for returning to school to focus on special education.

Cases of recovery

The word "cure" is considered taboo among researchers, and stories of recovery are rare. But they're not inconceivable for a disorder that affects one in 150 children in the United States. High-profile cases have inspired self-help books and made-for-TV movies. The Son-Rise Program and the Autism Treatment Center of America sprang from the apparent recovery of Raun Kaufman, an autistic child who stopped showing symptoms after his parents developed a comprehensive therapy program for him.

Actress Jenny McCarthy has garnered significant recent attention for autism recovery by claiming that a special diet helped her son cease his autistic behaviors.

Researchers warn against following these examples too closely.

"What is true for one child is not going to be true for most children for autism," said Susan Swedo, chief of pediatrics and the developmental neuropsychiatry branch at the National Institute of Mental Health. She has just begun a study on autism recovery.

While it's possible that children like Roman stop showing symptoms, it's also conceivable that they received a "squishy" or inaccurate diagnosis, she said. A behavior checklist rather than a medical test determines whether a child has an autism spectrum disorder. So if the child was having a bad day during the evaluation or has a general fear of strangers, that can affect the results. She also noted that the previous behaviors could re-develop later in life in less structured settings, such as a junior high cafeteria.

Scott's repeated and rigorous training techniques resemble the most commonly accepted autism therapy, Applied Behavior Analysis, Swedo said. And they only could have helped in an area where so much rides on early intervention.

"The earlier you start, the more time you will have to be in therapy and won't get stuck in negative patterns," she said.

The American Academy of Pediatrics recommends autism screening as early as 18 months. The academy also encourages systematic activities for at least 25 hours a week even before a definitive diagnosis is made.

Time-intensive process

Most parents don't have this same time or financial means to focus solely on their children, said Dr. Doreen Granpeesheh, the founder of the California-based Center for Autism and Related Disorders.

"You're basically teaching a child a new communication system," she said, emphasizing that even several hours a day of structured one-on-one lessons from mom or dad can help a child under the age of 7. For the busy parent, she suggested paying a high school student to go over reasoning skills or asking a sibling to play games that require hand-eye coordination.

Granpeesheh endorses the notion that some children can recover from the disorder. She worked on the seminal 1987 autism treatment study that spanned two years and showed astounding progress in autistic children after 40 hours a week of behavioral therapy. Almost half of the children tested normally when the study ended. She has continued her own research, and completed a documentary last year that featured four children who, like Roman, no longer show signs of autism.

Entering mainstream

Autism studies are gaining more ground as the word enters the mainstream. The National Institutes of Health will commit about $60 million from the stimulus package toward autism research, the most funding to date. The Texas Department of Assistive and Rehabilitative Services started a pilot program last April that gives $5 million to four Texas agencies devoted to autism spectrum disorders and behavioral therapy.

In the meantime, parents search for reassurance, advice and clarity for this perplexing condition and its myriad forms.

"We've ordered a couple of copies [of Scott's book] for the family," said Kimberly Henderson, a St. Louis resident whose 2-year-old son has developmental delays and is undergoing testing. She squeezes in lessons when she gets home from work at 6 until bedtime. "I use it as my textbook. Knowing that she has overcome this is important to me."

Roman also knows his mother has written a book about him but doesn't fully understand why. He still exhibits a few quirks. He understands comments on a more literal level than most kids and hates the texture of almost all foods, but he already has "a million girlfriends."

He has plans to be an architect, once he makes it through first grade.

AUTISM RED FLAGS, TREATMENT TIPS

'Red flags'

•Does not make eye contact or interact with other children

•Does not react to smiling and is resistant to change

•Is unusually attached to certain objects; excessively lines up toys

•Is prone to tantrums

•Does not babble, coo or make meaningful gestures (pointing, waving, grasping, etc.) by 1 year

•Engages in repetitive behaviors (hand twirling, flapping)

•Is oversensitive or undersensitive to pain

•Has fine or gross motor problems

Treatment tips from Elizabeth Scott

1. Stop repeated behaviors: Count down to warn the child to stop a repeated habit, then replace it with a toy or activity.

2. Focusing: Have the child sit at a small table and participate in a variety of activities (shape sorter, Play-Doh, arts and crafts) for one to two minutes. Increase the time per activity over weeks. Use a timer and lots of language to keep the child talking.

3. Daily living activities: Incorporate skills into regular activities such as feeding, bathing and driving. Have a "goodie bag" of stuffed animals, squishy balls and flash cards. When the child is done with one toy, hand the child another. Interact using the toy. This will keep the child focused on something purposeful even while you are doing your daily routines.

4. Improving fine motor and gross motor skills: Have the child lace pictures, play with beads, use stamps, and do stacking and sorting. Increase gross coordination with activities such as tunnel play, rolling and throwing a ball, basketball shots, bowling and using playground apparatus.

SOURCES: Autism Society of America; National Institute of Child Health and Human Development

RESOURCES

If your child shows signs of autism, contact your pediatrician or a family practitioner.

OTHER OUTLETS

North Texas providers for the state's Autism Services pilot program:

•Child Study Center

817-390-2880

•Easter Seals-North Texas

888-617-7171

Department of Aging and Disability services and application for Medicaid waivers: www.dads.state.tx.us/services/index.cfm

Early Childhood Intervention: www.dars.state.tx.us/ecis (children 0-3)