BOULDER – Thousands of disabled Coloradans will be getting help from the state for the first time, but a Boulder mother says it's too late for her son.
Aaron Tuneberg, 30, had special needs and qualified for state help. He was on a waiting list for nine years and was murdered before he was able to get services.
His mother, Gale Boonstra, wonders if Tuneberg's life would've been different had he gotten the help.
AARON TUNEBERG: LOVING AND GENTLE
"When he was 3, he was diagnosed with some developmental disabilities," Boonstra said. "Outside of that, he was an adorable toddler with blond hair and big brown eyes."
During his short life, Tuneberg struggled in many ways.
"He was just always trying very hard to be accepted, to fit in," Boonstra said. "He was depressed. I think he was depressed because he was high functioning enough to know he was disabled, and I think he wanted to be normal and have normal things."
The state helped Tuneberg during his early years. He volunteered, had job coaches and support during high school. Then he graduated.
"They fall off the cliff basically [after high school]," Boonstra said. "Without services, he was really on a little island kind of by himself to make his own way."
Tuneberg qualified for the next level of state help known as the "Supported Living Services waiver."
The SLS waiver provides more than a dozen services including pre-vocational services, professional services, and support employment.
The waiver would have also provided Tuneberg structure and a mentor. He qualified for services in 2005. He was on the waiting list for nine years.
"Little crisis would arise. I would go there or call them as recently as January of this year to see if they could help us," Boonstra said. "The constant response was 'call the state and find out where he is on the waiting list.'"
TUNEBERG WAS BEATEN TO DEATH
Tuneberg was beaten to death in his Section 8 Boulder apartment in March. Police say he let his alleged attackers inside. Boonstra said she didn't think her son could perceive danger.
"The hardest thing for a mother or a parent, but I think a mother particularly, [is] to lose a child," she said. "Our children shouldn't pre-decease us."
Two 18-year-olds were arrested and charged in Tuneberg's murder. Police say one used an aluminum bat to beat the 30-year-old; the second one potentially used a golf club. Court records show one of the teens called 911 after the attack. Both are still going through the court process.
Tuneberg's mother said her son really wanted to live alone, aching for what the rest of us take for granted: independence.
While the waiver Tuneberg waited for didn't provide 24-hour protective oversight, his mother believes he would've been more successful living on his own. She says no 30-year-old wanted his mother taking him to doctors' appointments or job interviews.
"There is no way to know if he'd still be alive if he'd had his waiver," Boonstra said. "I absolutely believe the last nine years of his life would be more meaningful to him with those services. I believe he'd likely still be alive."
Barbara Ramsey is the Director of Department of Health Care Policy and Financing Division for Intellectual and Developmental Disabilities.
Ramsey says people had to wait an average of eight years for services before the most recent legislature appropriations.
"It's a long time. People have waited longer during harder financial times. Back in 2009 and 2010, when we had no money, people had to wait even longer," Ramsey said.
Ramsey's not proud of these statistics, but that was the state's financial reality until this year, when the legislature allocated about $71 million for services.
"We said we would like to serve 2,040 more people, and at the time we asked for those dollars that was everyone on the waiting list," Ramsey said.
Ramsey says this year the state has made tremendous strides in serving people with disabilities. The average cost per person for the Supported Living Services waiver is $16,000 per year. The higher end of that is $30,000. This year, the legislature approved to increase the $30,000 service limit to $45,000, the first increase in 15 years, Ramsey said.
"It's such a win; it's such a win," she said. "The cost of services have gone up over the years. This allows people to have a broader range of services available to them."
In all, the state funds 11 different waivers including home and community Medicaid programs for long term care needs. Federal dollars are available for those programs to match the state expenses.
The state says in the 2014-15 fiscal year, everyone on the SLS waiting list are receiving services this year. The help won't be immediate, because service providers need to hire people to ramp up the help. It is likely that Tuneberg would have gotten services this year.
But the way the system is structured now, after the state services additional 2,040 people on the SLS waiver - bringing the total to 5,300 people - there won't be money for anyone new unless someone currently being served gets off the list.
This means the waiting list will start over.
That's why House Bill 14-1051 mandated service providers to figure out how to serve everyone by 2020. The state plans to submit a plan on how to do that in November.
"It's not soon enough," Ramsey said. "These changes aren't just for people with developmental disabilities but everyone with long term care needs."
Even though the legislature allocated enough money to eliminate most waiting lists this fiscal year, there are still approximately 2,600 people waiting for services.
TECHNOLOGY IS THE ANSWER TO EXPAND SERVICES
Imagine in Boulderis a community organization that supports people of all ages with cognitive, developmental and physical needs.
Imagine's CEO Mark Emery believes technology is the answer to the population's growing need for services. Imagine offers support for those trying to live on their own as well as in a small group setting.
"Where are there alert systems we can put into my living situation to help me be safer, less vulnerable? Are there ways for those alert systems to go out via the internet, to my family, so they can alert to check on me or make phone calls?" Emery said.
Having worked in the field for 30 years, Emery said the state's most recent influx of dollars to serve people is a step in the right direction.
"It's the biggest most significant change we have seen in Colorado since I've been in this field," Emery said. "You look at something that's remarkable that you have not seen before."
He said the 2020 plan to get rid of the wait list is doable.
"We have to get a system in place that is going to be sustainable and something that's going to be sustainable when our work force is declining," he said.
MOTHER WITH A PURPOSE
For Tuneberg's mom, 2020 is also not soon enough.
"My mission now, because my son is gone and I don't want another family to go through this, is to do anything and everything I can to raise awareness in our community," Boonstra said.
This means using the money the family had set up for Tuneberg's special needs trust to help others get services.
Tuneberg loved bicycles. He could take them apart and put them back together, but he wasn't able to do anything vocational with those skills.
One of Boonstra's goals is to reach out to Boulder's many bike shops and endow a bike repair program. Boonstra hopes if the shops are willing, she would love people with disabilities to be able to intern and maybe eventually get jobs.
"That will help them be integrated into the society, so they can have meaningful and safe lives around typical people who can help support them," she said. "I and like-minded people like me will continue to be out there talking about this, raising the issue on behalf of all the Aarons."
If you would like to donate to help Boonstra with her mission, you can do so by logging on http://www.commfound.org/. Select "Donate Now" and then designate Aaron's Fund.
If you want to reach out to Boonstra, email@example.com.
c/o the Community Foundation Serving Boulder County
1123 Spruce Street
Boulder, CO 80302
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