Wilson's pleas to prevent health care cuts unanswered

Keeley Wilson of Havre, 18, was one of 20 people to testify at a Montana Department of Public Health and Human Services meeting in Helena July 27, where she urged the department not to enact cuts to reimbursement rates for disability service providers.

When she was 6 months old, Keeley was diagnosed with Williams Syndrome, a genetic condition that causes developmental delays and a host of other medical issues.

In her testimony, Keeley said she has since been diagnosed with 15 other conditions that will remain with her for her entire life, sees 17 different doctors and specialists, takes 15 different medications and has to have a tube in her stomach to flush it every day.

Since her diagnosis at 6 months old, she testified, Wilson and her parents have received support from Quality Life Concepts, a nonprofit based in Great Falls that provides a variety of support services to people with developmental disabilities through child waiver services, a Medicaid waiver program for a select number of people from birth to age 22.

Keeley testified that Quality Life Services has helped cover the cost of adaptive equipment like specialized seats, occupational and speech therapy, respite care so an adult can care for her while her parents are at work or doing errands.

Her mother, Dottie, who was not at the hearing, said Quality Life Concepts has also helped cover the cost of medical-related travel. Wilson said she and her daughter have to go to Great Falls once a week for a doctor's appointment, Missoula eight to 10 times a year and Seattle once or twice a year.

"Without all these things, I kind of don't think we would be able to remain in Havre as part of this community," she said. "We may have been forced to move to a big city that is right by a children's hospital."

Despite Keeley Wilson's testimony, Quality Life Concept services might soon be receiving less money due to a combination of spending cuts to DPHHS.

Dottie Wilson said she thinks Keeley's future is on "a good road." She said between the business Keeley runs making and selling homemade pet treats, good insurance coverage the family has and the fact that she will soon be eligible to receive some Social Security supplemental income, they should get by.

However, she said, she thinks it is worrisome for the families of children who were in the position she was once in.

The cuts are the result of reductions to DPHHS, which provides Quality Life Concepts with the bulk of its funding, and mandated triggered budget cuts put in place by the Legislature if state revenue comes in less than expected.

SB 261, which passed by the Montana Legislature this spring, enacted budget cuts triggered the cuts when state revenue came in is less than $2.216 billion this year.

A July 26 memo from the Montana Legislative Fiscal Division said the state brought in $2.1415 billion, $74.5 million short of what was needed to avoid the triggered cuts.

State agencies will have to cut their budgets for the 2018-2019 biennium by 0.5 percent or a total of $12.9 million.

DPHHS, which oversees the grant program, will be forced to absorb $26 million in cuts, including a 3.47 percent reduction in rates the state pays to organizations like Quality Life Concepts, which the state contracts with to provide disability services.

"If these cuts are adopted, QLC will face a daunting discussion of how we cut $225,000 from our budget," Quality Life Concepts CEO Karen Dattilo said in a letter sent to families.

If the rate cuts go into place, Dattilio says in the letter, areas affected by the cuts could include discretionary spending including staff bonuses and training opportunities, reductions in salaries, reductions of hours for direct care positions, increased group home and board fees, and reduction in the number of clients Quality Life Concepts serves.

The letter says Quality Life Concepts has already stopped taking on new clients.

Dattilo said families Quality Life Concepts serves have been notified of the cut and sent letters to Gov. Steve Bullock and DPHHS Director Sheila Hogan.

"We are trying to advocate and educate people that cutting 3.47 percent from services that are already not funded appropriately is going to hurt," Dattilo said.

Sandi Hursh, the children services director at Quality Life Concepts, said 41 people in Blaine, Cascade, Chouteau, Glacier, Hill, Liberty, Pondera, Teton and Toole counties are served by the children's waiver service, while another 40 or 50 are on the waiting list to receive services when they become available.

DPHS Public Information Officer John Ebelt said the department is taking the necessary steps needed to enact the cuts as required under SB 261 and the budget, both of which require rate reductions totaling more than .5 percent.

"The .5 percent reduction is one of the components of the 3.47 percent reduction," he said.

He added that a $3.5 million cut is required under a separate section of SB 261 for FY 2018 and in other legislation.

Dattilo said five members of the Children, Family, Health and Human Services Interim Committee made up of state lawmakers have agreed to issue an "informal objection" to the provider rate cuts.

She said the committee will hold a meeting Sept. 11 where there will be additional discussion on the cuts.

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Keeley Wilson's Statement

Hi, I'm Keeley Wilson. I am 18 years old and I'm a special needs kid. I've had services from Quality Life Concepts since I was 6 months old. That's when I was diagnosed with William's Syndrome. Since then, I've had 15 more diagnoses that will be with me my whole life. I see 17 different doctors and specialists for these on a regular basis. I see 4 different therapists each month. My mom and I travel 25,000 miles a year for medical treatments. I've had 22 surgeries. I've spent lots of time in different hospitals, even over holidays and birthdays. I take 15 different medications every day. I also have a tube in my tummy that needs to be flushed every day. Every week have an infusion for my immune deficiency. With all my medical needs, my mom has always had to be there to take care of me. To be safe, I always need an adult who knows about me around to take care of me. Both my mom and dad also have to work full-time to take care of our family. My mom has been really creative about running small businesses so she is able to make my medical needs a priority and work. Still, my family and I need support from services to make sure I have people who are trained and know me when I am out and about in the community.

Quality Life Concepts has provided me and my family many different services over the past 18 years. They have also helped to guide my family so I got what I needed. As I grew up, I needed different things. When I was a baby, QLC helped me get to a special team of doctors because I wasn't eating and gaining weight. In the past, I've needed adaptive equipment like special strollers and special seats. My family and I also got to go to conferences with the Williams Syndrome Association so they could learn more about how to take care of me and meet other families like us. I've been able to have speech therapy, occupational therapy, horse therapy. When QLC and my parents found out that people with William's Syndrome learn really well when things are taught through music, QLC made sure I had music therapy. QLC also has provided respite for my mom and dad so they can make phone calls, run errands and take care of things for our family and still make sure I'm safe. Now, my favorite service from QLC is the Groovy Girls and Positive Peers groups. This has been a safe way for my friends to get together, play games and hang out like teenagers do. Tina Thomas, my case manager at QLC, has always been able to help my parents know what might be coming next for me. She has told my mom about other programs that I could be involved in, like Voc Rehab. She also goes to meetings and appointments with me and my mom when we ask. She helps guide my mom and dad and advocates for me. As I grow up and become more independent, QLC makes sure my services change to meet my needs.

I've told you about all my medical needs and diagnoses and I've told you about how QLC was able to provide different services for my different needs. Still what I really want to tell you today, is that I am 18 years old and even though I have 15 different medical diagnoses and need services to make sure I am safe, I am way more important than any of those things. I am an important person to my community. I work every day at my own business where I sell cat and dog treats. I also help my mom in her bakery. Since I make my own money, I can give back to my community when I buy the things I want and need. I also give back when I volunteer in my community and at my church. I have organized three fundraisers to raise awareness for people with William's Syndrome and people from all across Montana attended those. I also am a member of the Blue Pony Special Olympics team and travel three times a year to the state games. I love musicals and plays. I attend all sorts of events in my community to support different groups. I have many friends and make new friends every time I go somewhere or a new customer comes in. I have become a very smart, independent, helpful and hopeful person. I have made many of my dreams come true and I have lots more ideas that make me really excited about my future. Even though I will always need support from people who are trained and know me and it takes my mom a lot of planning and we have to pack a lot of stuff for me to do the things I want to do, knowing that I will be safe and taken care of makes me keep trying to give back to my community.

Please don't cut the services that I've been blessed to receive. I know they've helped me become the smart, independent, and helpful person that I am. I want to make sure that other special needs kids and their families can also grow, be independent and give back to their communities.

I do have lots more I'd be willing to share. I'd be glad to answer any questions you have for me.

I want to thank you for listening to me today.