WICHITA, Kan. – McRae Wooten can’t decipher danger around her. She turns on the gas stove without setting a flame and sometimes goes outside unnoticed and gets inside the family car. She’s 21 years old, but she can’t talk and has the mind of a young child.

Her parents – Mary Jane Wooten, 65, and Brent Wooten, 66 – have been waiting more than seven years to receive help from the state.

“When you’re a young couple, you joke about the ‘terrible twos,’ and you can laugh about it because you know it’s a phase,” Mary Jane Wooten said. “But it’s forever for us.”

They are among more than 4,000 families in Kansas alone on a waiting list for services for those with disabilities or developmental delay.

The Wootens have tried to pay out-of-pocket but found some organizations only accept money from the state disability system and do not have an option for private pay.

McRae’s seven-year wait is not an outlier. In fact, the state said that a seven-year wait is typical. The last person taken off the waiting list from Sedgwick County where the Wootens live – which happened July of last year – had waited for help since Dec. 3, 2008.

In an e-mail response to questions from The Eagle, the state said it is preparing to offer services to another 157 Kansans on the waiting list, 15 of them in Sedgwick County.

Since the Wootens have been waiting since Dec. 18, 2008, they hope they are next. State services would allow someone to come watch McRae when the Wootens need a break or while they run errands. The services could also help with housing and day care.

Parents or guardians of people with these disabilities often quit their job because taking care of their loved ones becomes a full-time endeavor.

Wooten said she walks two miles a day and lifts weights so she’ll have the strength to continue caring for McRae, who often sits on the ground, dead-weight, when she doesn’t want to do something.

“The bigger she gets, the weaker we get,” Wooten said, referring to herself and her husband, who have three children older than McRae and now have six grandchildren.

‘Inefficient and incorrect’

In 2016, services for people with disabilities and developmental delay in Kansas will cost $367 million – 57 percent from the federal government and 43 percent from the state. The state could expand the program, if it had more money to pay for its 43 percent match.

As of last month, about 3,450 Kansans with intellectual or developmental disabilities were on the waiting list. Another 1,086 Kansans with physical disabilities are waiting on another list for services.

But the number of people waiting could be higher, according to those who work with those with disabilities.

People who are supposed to be on the waiting list sometimes disappear from the computer system, according to the Developmental Disability Organizations in Johnson and Sedgwick counties. Sedgwick County said it had 130 people that were not on the most recent list from the state. Johnson County said it had 114 missing from the waiting list as of mid-December.

Sherry Arbuckle, service access and operations director for the Sedgwick County Developmental Disability Organization, said the state also doesn’t have clear policies about how to manage the waiting list.

“The management of the waiting list has become an extremely inefficient process,” Arbuckle said. “It has become very inefficient and incorrect. The validity of the data is very questionable day to day.”

Arbuckle said the state made improvements to the system recently, so she’s hopeful the accuracy will improve.

Some parents are so frustrated with the lack of help from the state that they are staging a “Restore Kansas” rally next week.

They hope parents with children in public schools, the elderly and those in need of mental health services will join them to deliver a message to lawmakers to restore funding for vulnerable Kansans.

Wooten is one of the speakers.

Even though McRae can only say five words, she’s a 21-year-old adult citizen of Kansas, Wooten said.

“They don’t get it,” she said. “If every one of those politicians had to walk a week in our shoes, they would be begging for mercy.”

But nonetheless, she looked at McRae and said with a smile, “They’d be lucky to have you.”

McRae is diagnosed with intellectual disability, developmental delays, autism and seizure disorder.

Wooten said every year they check McRae’s status on the waiting list, and are told each time that they’re moving closer.

“The process is difficult, convoluted and then there’s still a chance it won’t happen,” Wooten said.

Even when services are offered, they don’t always make sense, she said.

Terri Norgren, a family friend of the Wootens, has a daughter with disabilities who needs a wheelchair and receives state services. Norgren said the state covered her daughter’s wheelchair, but not the wheels.

“It just doesn’t make one bit of sense,” Wooten said.

Getting older

Wooten and her husband are getting older. They won’t be able to take care of McRae forever, and state services seem like a pipe dream at times.

Wooten said their eldest daughter said when she was 17 years old that she wanted to be McRae’s guardian.

But Wooten said her daughter now has four children under the age of 7.

“So we want to be able to take care of McRae as long as possible,” Wooten said.

She said they’re lucky to have such a supportive family for McRae, given that they don’t have state services lined up.

Wooten said she and Brent are OK for now because they can afford to take care of her.

As she talked, Wooten thwarted McRae from taking mail off the counter and trying to take food from the freezer and cabinet.

Wooten said McRae wakes up twice a night, so she or her husband get up to change her and put her back to bed.

She has five to 10 seizures each day and can’t be left alone for any period of time.

McRae is also affectionate. She kisses and hugs her mom frequently and loves to cuddle.

She loves green and red and will wear her winter coat as long and often as Wooten will allow her.

McRae loves music, especially Christmas songs. She knows how to work the CD player in her living room and will turn the music so loud, Wooten says it reaches the point it could damage her hearing.

‘You just get tired’

McRae graduated from Maize High School in May 2013 in a program for those with special needs and was able to stay within the school system until May 2015.

She now goes to day services from 7:30 a.m. to 4:30 p.m. weekdays at Catholic Charities. The Wootens pay out-of-pocket on a sliding fee scale.

Trained disability providers are offered through the state disability system, but the Wootens rely on a family friend who knows how to watch McRae when they need a baby sitter.

She watches McRae twice a week, but the woman now cares for grandchildren of her own.

On one hand, Wooten said, they hate to ask the state for help. But they know they will need help to provide for their daughter as they age.

“We’re really independent,” Wooten said of herself and her husband. “We have a knack for just wanting to row our own boat, and sometimes it’s hard. … These kids are so busy, and so needy, that you just get tired.”

© 2016 The Wichita Eagle
Distributed by Tribune Content Agency, LLC

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