Texas State Funding For Few Medically Fragile Texans
Texas State Funding For Few Medically Fragile Texans
Toby Simmons was medically so fragile that he needed help for even breathe or swallow. For the initial twenty years of his life, he was under round-the-clock care at his foster mother's house.
After he attended the age 21, he was no more eligible for the state's children's health program benefits that he was enjoying for the last two decades and it became so expensive to continue regular nursing care. The state's suggestion was 'An Institution'.
His foster mother however had another answer and that is a provision that the lawmakers established two years back to keep the medically fragile people at home. But in spite of her requests and Simmons' doctor's warning that he was very much delicate to be in an institution, the state government refused to fund for keeping him at home. In May'09 he was moved to a nursing home in Killeen area and unfortunately within just one day, he died; the reason is still unknown.
Lawmakers created this provision for keeping the medically fragile persons at home since home is safer than keeping them in state schools or low-cost nursing homes. However, the disability rights lawyers tell that the state personals have explained it so unclearly that almost nobody qualifies for the provision.
The provision went into effect from 2007 and only five out of 23 eligible people from Texas Department of Aging and Disability Services got the advantage of this provision. Moreover, all of them had to sue the agency to get it. The rest remained out of the institutions, since their families gave up services to be under the government's price cap for nursing care.
Demand for such services is however likely to rise. Lawyers estimate over 200 medically fragile children would be aging out of state's children's program in the coming six or seven years.
Juanita Craig, Simmons' foster mother said that their doctors, nurses told them that Toby would not survive in an institution but the state enforced them to get Toby admitted into it.
According to the Texas state health officials, they never insist anybody into a low-cost nursing home or a state school; they try to provide inexpensive and safe care for the people willing to be at home, by all means.
However, they add that many ill people with severe health conditions get first-rate treatment in the state institutions. And, they mention that budget rider did not come with raised funding. The problem is that if the state provide expensive in-home healthcare to the people who could have been better treated in the nursing homes or state schools more cheaply, then they will have inadequate fund in their hand to take care of other medically fragile people.
Laura Albrecht, an agency spokesperson said that it is obvious that the families of such people consider this as life-and-death condition for their dearest ones. They try their best to keep those people at home like others who also want to receive these services.
The dispute associates the hundreds of Texans with the most medical fragility. To them, care is highly expensive and lengthy. Each of such people can cost state about a half-million dollars every year; over the major sacrifices their relatives make for providing them proper care. Decisions in such matters are often not easy and driven by emotion.
According to the Texas Disability Policy, the government will disburse all the payments for keeping the medically fragile kids at home; irrespective of blood relatives or foster parents, but only up to 21 years. After that, different rules will be in effect.
However, the state law permits them to be in home and promises to provide all the expenses until the amount is no more than double of the amount it requires to keep them in institutions. If the state officials decide that the home healthcare expense crosses the limit, then the person will get three choices; to move into state schools or nursing homes, to use 2007 provisions or to cut the at-home expense to equate the difference.
Reconciling for less
The dispute is however in fine print. For a person to be qualified for the exclusion, the healthcare officials should decide that the person should not be able to move safely to an institution- he or she has to meet tough criteria- as said by the state advocates while the state physicians are assessing the matter.
Consequently, some family units should have to reconcile for less for keeping their dear ones at own home.
For instance, Michele Michaelsen and Pete from Fort Worth consented about reducing nursing hours for keeping their 24-years old child, Sasha. She has been suffering from serious brain disorders and spastic quadriplegic cerebral palsy. However, she was not qualified for the exclusion.
And, now, when a taxing work week is over, Sasha's parents has got almost no nursing assistance on weekend and they alternatively stayed up whole day and whole night to help their daughter; so that she can breathe and to give her some relief from recurrent seizures.
Sasha's father said that their plan of a date was a candlelit dinner in their living room- Sasha's body propped up on couch and her suctioning machine was buzzing in the background.
Sasha's parents are restricted to the limits. Pete, Sasha's mother tells that they have no other option; since the state healthcare officials say Sasha would not survive in an institution. And, her husband said that they have already fought so many battles in different fronts, so they are ready to fight another battle to keep their daughter alive.
Simmons' mother, Craig is well known about all such battles. She devoted her life to keep his son alive. She spent years after years navigating his son's cerebral palsy and other neurological disorders. She along with continuous rotation of nursing staffs observed Simmons' breathing, his body temperature and tried to control his frequent seizures.
Even the physician, who treated the boy since his birth, confirmed that he would not be well in an institution, healthcare officials and then a court stated otherwise. The Texas healthcare officials said in the legal briefing that they are unable to serve many other disable people if they bear the cost of keeping the boy at home.
Craig narrated when she got his son, the state officials said that take him and love him- he would not live more than 3 months and that was very much painful to a mother who raised her son up to 22 years.
Autopsy has not been completed till date and Simmons' death is still under investigation.
No Perfect Answer
Texas state healthcare officials say that the cost has placed them in difficult situation. Almost half of a million dollar is required to keep a seriously disabled person at home- an amount that can serve over a dozen of less serious disabled people.
According to Albrecht, the spokesman for the state agency, there is a debate always that whether a lot of disabled people should get moderate treatment or only few seriously ill people get too much amount. They don't really have any answer.
In most of the cases they try to provide treatment at home as well as provide others quality care. They are always there regarding the key services. However, Albrecht mentioned that the families are hurrying in most cases.
State lawyers say that scrimping on the services can result in unpleasant consequences; especially for the ill people and their relatives. Nevertheless, they say that the state healthcare officials have small amount for spending and for keeping a disabled person at his home. They actually don't receive the federal matching amount and that eats away at bottom line.
The relatives have little options for appealing the state's verdict, apart from expensive lawsuits.
Kathryn Lewis, the Advocacy Inc. attorney said that those working on the issue were encouraged when it came out initially. They thought it to be a solution to what has been a constant problem. She said that she saw almost one dozen cases filed over budget provision. Rather, it has become a way of refusing at-home care and the relatives are forced to reconcile for less.
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