Families protest changes in Tennessee's policies for people with intellectual disabilities

From the Jackson Sun in Tennessee:

LEXINGTON - The words come out slowly and with great effort.

"School." "Wash." "Eat."

Thirty-two-year-old Caleb Sorrels (pictured) shows visitors around the house where he lives with a full-time staff member. He points at the dishwasher, which he has just finished loading, and the dryer he loves to run.

Then he walks to the refrigerator for his favorite drink, Dr. Pepper. A worried look crosses his face when he sees only two cans.

"Store," he says.

Caleb was born with a rare genetic disorder called chromosome 21q deletion syndrome. He has the speaking ability of a 2-year-old and the mental capacity of a 5-year-old.

His mother, Sallie Sorrels, has learned to interpret much of what he says and wants, talking for Caleb when he needs more than a word or two.

That is why Sorrels is speaking out against new state protocols that will force Caleb to have one or two roommates in the house the family built for their son.

"We are the only voice he has," she said, sitting in her Lexington home in March. "Caleb can't defend his rights, and if we don't do it, no one else will."


Sallie and Gary Sorrels said that since July 2008 they have received letters from the Division of Mental Retardation Services telling them Caleb's services will change because of changes in state protocols.

Caleb's house manager and two other staff members provide 24-hour care paid for under Medicaid waiver services, a service that is categorized as Supported Living 3 Individual. Caleb receives Social Security Insurance benefits to pay for his living expenses.

In March, the family received a letter from Mental Retardation Services stating that Caleb was no longer eligible for individual living unless his family could prove it was medically necessary.

Even though his parents own the house where Caleb lives, they were told they have five months to find a housemate for Caleb.

"They are switching to two people in a house or ideally, they want three," Sallie Sorrels said.

If they do not find another person to live with Caleb before Aug. 31, the letter says the amount of money paid for staffing will be reduced.

Sallie Sorrels said she did not know how much the funding would be cut, but it will not cover the pay for full-time staff if they do not find a housemate.

The Sorrelses have appealed the ruling but have been told that they have the services they require, so the appeal has been dismissed. They have been told they can appeal again after August, Sallie Sorrels said.

"Everyone is telling us that most people are not winning their appeals," she said. "We can't prove it will kill Caleb, (but) we are very worried about what will happen if a stranger moves in with him.

"It tromps on Caleb's rights and the workers' rights, and there is nothing we can do about it," she said.

Caleb is territorial, his parents said, and they are worried how he will react when a stranger intrudes on what he considers his personal space.

"Caleb is a happy person but not a flexible person," Gary Sorrels said. "This is moving backward. The state says they provide care in the least restrictive environment, but that is not what this is."

Medicaid waiver services, such as those Caleb receives, are typically meant for those with milder disabilities who do not need as much help for physical and behavioral problems.

After dealing with several lawsuits in the past decade and a half, Tennessee's spending on mental disability care is among the highest in the country. Still, nearly 6,000 people are on a waiting list for Medicaid waiver services.

As Tennessee grapples with a tough budget year, state leaders have talked about cutting those costs.

"We've got a waiting list of thousands and stuff like this that we can't afford to be paying at the highest levels of the nation," Gov. Phil Bredesen told Mental Retardation Services officials at a budget hearing in November.

Single-person care has been one of the main targets. The state spends more than $300,000 a day on the program, Mental Retardation Services officials say. They did not have numbers on the average cost to provide services to a single-person placement home.

Missy Marshall, a Mental Retardation Services spokeswoman, said she was not sure how many single-placement homes would be affected by the new protocols, but the state has 691 homes for which it provided staffing in January 2009. That is down from 810 in January 2007.

Stephen Norris, deputy commissioner of Mental Retardation Services, said the state has likely allowed too many single-placement homes over the years. He estimated that halving the number of people who receive single-placement services could free up $20 million that possibly could be used to provide services to those on the waiting list.

The Sorrelses said they do not want to appear ungrateful for the help they have received.

"We realize there are many people that don't have the level of care Caleb does," Sallie said. "But we are his parents, and we have to stand up for him."

"We appreciate what is being done for him and for our families," Gary said. "We understand that it is a financial situation. But they are taking it out on the people that don't have a voice. There is money out there, if they tried."

Norris said changes need to be made.

"While we want to help as many people as we can, resources are finite," he said. "We get paid to make those hard decisions. If you don't want to make hard decisions, you need to go do something else."

Randall Livingston, Caleb's house manager for more than a year, said it is hard to determine how Caleb will respond to having a housemate.

"He is very routine-oriented and knows his way around the house," Livingston said. "And he is used to being here by himself."

On one weekday evening, Livingston helped Caleb load the dishwasher and then clean up for Wednesday night church services. Livingston, Caleb's primary caregiver, sees him off to Easter Seals, a day center for people with disabilities, and is there when Caleb returns home in the afternoon.

Two other staffers fill in to provide 24-hour care.

Livingston said he has worked in two- and three-person placement homes before. Some of those situations work and some do not, he said.

"They (the housemates) need to be compatible," he said. "In one house I worked, one of the residents was aggressive and one was laid back. The aggressive individual used to beat up on the other person."

Livingston said it takes an organized and gifted staff person to provide care to several people at once.

"You have to be conscious of what you are doing at every moment and make sure they are protected from harm," he said. "The more people you are supervising, the more difficult it is."

Bill Brewer, the executive director for the nonprofit agency Madison-Haywood Developmental Services, said he understands that budget problems drove the decisions to cut funding to single-placement homes. But he said Madison-Haywood constantly is limited in the type of services it can provide because of funding cuts.

Since 1977, when he began working in the field, Brewer said he has seen several changes in how the state handles individual placement.

From the 1970s to early 1990s, the state advocated group homes with eight to 10 people in a home. Since the mid-1990s, supported living with three or fewer residents in a home was considered the best practice.

Madison-Haywood operates 42 supported living homes in Madison, Haywood and Hardeman counties, Brewer said.

In the last year, Mental Retardation Services began the process of reducing single-placement homes to lower costs, he said.

"Costs got a little out of hand, and they now have to pay the piper," Brewer said. "They can't fund single-placement homes anymore."

Generally, Madison-Haywood staff will not be paid more to care for additional people living together under the new protocols, he said. But payment is assessed based on individual needs and levels of care, so it is possible that pay would increase for some staffers.

Although Brewer said he knows budget cuts need to be made, he does not believe the needs of the individuals involved are being considered.

"It is very unfortunate, because you can judge a society on how you treat your elderly and disabled," Brewer said. "In this case, bad decisions are being made."

Norris, the deputy commissioner of Mental Retardation Services, said he thinks people in individual care have been unnecessarily isolated and their conditions could improve around other disabled people.

"We will look at each of these circumstances individually, and we will try to take (any potential problems) into consideration," Norris said. "I can understand where parents would have these misgivings about it, but these are questions we have to ask. ... Saving $20 million is a very compelling issue."

Soon after Caleb was born, his parents noticed that he was slower than most children in doing things. But they assumed he would catch up.

When he was 2, his worried parents took him to a medical center in Memphis. Doctors determined that Caleb had a break in his genetic code.

"They called us back into the room and told us he's not going to catch up," Sallie Sorrels said, remembering that day. "Everything got to spinning, and I put my head between my legs. You never think it is going to happen to your family."

When Caleb's disability was diagnosed, the doctors told his parents there might be eight other cases like his in the world, and it was difficult to predict how he would develop.

The couple took Caleb home and began what would turn into a lifelong battle to provide him with the best possible therapy and care.

For two years, they drove to Jackson so he could participate in therapy.

When he was old enough to start school, they wrote letters and talked to their local educators until the elementary school began a comprehensive development program.

Sallie Sorrels eventually got her master's degree in special education from the University of Memphis to learn more about working with Caleb.

After the special education program at his high school lost its teacher, she took the position for four years.

"It didn't seem that long; we were having such fun," she said. "I didn't think it was the best thing to be both his mother and his teacher, but they didn't have anyone else to do the job."

Caleb stayed in school until he was 22 and then began going to a local Easter Seals, where he assembles parts for fire extinguishers. Easter Seals provides services, education, outreach and advocacy so that people living with disabilities can live and work in their communities.

When Caleb was 27, his parents decided to make long-term arrangements for his future.

"He takes a lot of care, and we felt we needed to set it up if something happened to us," Sallie Sorrels said. "We talked and prayed about it."

"Several of our friends urged us to do this while we are able and take care of it," Gary Sorrels said. "That way we could know he is taken care of."

After researching their options, they found the supported living program, which would provide a 24-hour staff to live with Caleb.

With help from their parents and extended family, the couple built a small house for Caleb several miles from where they lived, and he moved into his own home.

"It was a very hard, wrenching decision," Sallie Sorrels said. "But we thought it was the right thing to do."

The Sorrelses say the five years Caleb has lived with his staff have been good ones, for the most part.

He goes to Easter Seals five days a week and goes to church with his family twice a week.

Whenever he can persuade his staff or parents, they eat at Wendy's, his favorite restaurant.

Caleb's developmental progress has improved since he has been on his own, Sallie Sorrels said.

"The staff is really good and work with him," she said. "As a mother, you try to do your best, but you aren't as firm or consistent as they can be."

He has become a fixture in his neighborhood, with some people sharing his storm shelter during bad weather and others bringing in Christmas cookies.

On warm, sunny days, he likes to ride his adult tricycle in his circle drive or down the quiet street.

"A lot of people in Lexington know who he is and come up to hug him whenever they see him," Sallie Sorrels said. "The goal has been so people like Caleb can be a part of the community, and that is what he is."

As Caleb's parents appeal the state's ruling, they will try to prepare Caleb for what may be ahead.

Whenever they mention someone else moving in with him, Caleb has a one-word answer ready: "No," he says with great emphasis. "No."

After all the difficulties they have been through, Sallie Sorrels said she dreads to think of going through several housemates to find a suitable person. She is fearful that Caleb will regress if he is placed in a stressful situation.

"Whatever comes our way, we will handle it," she said. "But it has been going so well, and we are proud for him."

Gary Sorrels said he believes the state eventually will find out that changing the protocols will not lead to savings.

"The staff turnover will be so much higher, and it will be harder to find people to work," he said. "I would be surprised if it won't cost more money."

He added, "We know what our son needs, and that is what we are trying to get for him."