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Healthcare bill provides for children with disabilities

The little girl with the silent voice is now being heard loud and clear.

"I can't help but know Ariana had a big hand in this," proud mother Teresa Kaseman said in reference to Senate Bill 2326, signed last week by Governor John Hoeven that will improve healthcare for children with disabilities.

Kaseman and her husband, Kevin, of West Fargo, are the parents of three children, Alex, 4, Lucas, 3 and Ariana, 6, who passed away February 23, as the result of an undiagnosed regressive neurological illness. Lucas is suffering from the same disease.

Teresa, her two boys, and her mother, Donna Gross of Jamestown, were among several other advocates in Bismarck last week to celebrate the momentous occasion.

"I was so proud of Ariana that I had a really hard time holding back the tears," Teresa said. "When we were lobbying for this bill to be passed, I had written a story about the struggles that our family had with insurance. That very story was read the day of Ariana's funeral and I know that our situation laid the groundwork for this bill to be passed. I knew that Ariana had great things to teach us and when the governor signed the bill, she was there with us, pushing the pen right along."

Senate Bill 2326 authorizes the Department of Human Services to establish and implement a Medicaid buy-in program to provide medical assistance and other health coverage options to families of children with disabilities whose net income is as much as 200 percent of the federal poverty level. The bill will also enable the agency to implement a waiver to provide in-home services to children with extraordinary medical needs, who would otherwise require hospitalization or nursing home care. To be eligible, the child must be determined to have a disability under the Social Security Act.

North Dakota will be the first state in the nation to implement the measure, which is authorized by the U.S. Congress in the federal Family Opportunity Act of 2005. The North Dakota Legislature has authorized $2.7 million to implement the measure.

In addition to SB 2326, Hoeven also signed a second piece of legislation, House Bill 1256 which creates a state Prescription Drug Repository to collect and distribute unused medications so that pharmacies and physicians can distribute them to those who can't afford them.

Hoeven told those present that "providing affordable prescription drug relief, especially for seniors and those who are critically ill, and taking care of children and families in need are two of the most important things we can do in the area of healthcare. Everyone involved in initiating and passing these bills should be proud of the good work they've done for some of the most vulnerable North Dakotans."

District 13 Senator Judy Lee, who was one of several sponsors, said SB 2326's passage "was one of the real successes of this session. It provides support for families with children who have exceptional and expensive healthcare needs by permitting them to buy into Medicaid for the child. These families already are dedicating themselves 24 hours a day to the care of these children; it's only right that we provide financial assistance for that care."

Other sponsors attending included: Sen. Tim Mathern; Sen. Tom Fischer; Rep. Clara Sue Price; and Rep. Jasper Schneider. Also joining the group were Donene Feist, state director of Family Voices of North Dakota; Sen. Dick Dever; and family members of special needs children.

"This bill is a major step forward for the families who have been denied opportunities so that their children with special health needs and disabilities can get the care they need," said Feist, whose son Zachary is a special needs child who has overcome many obstacles. "It will remove some of the barriers that prevent families from staying together and staying employed - while giving hope and freedom to those who deserve it most."

Teresa agrees. "This bill will cover costs of medical expenses that could be the downfall of a typical family. To know that families who would not normally have access to medical health care will no longer need to compromise their children's healthcare needs because of the outrageous cost of medical expenses gives me peace of mind. They need not ask the question "Do I compromise the health of my child or the safety that a roof over our head provides?" I've been in that situation and it's no fun."

"There is an income limit in order to gain access to the program which is unfortunate because when you have a child with special needs, the cost of their care literally reduces your household income to less than half of your potential earnings," Teresa added. "With that limitation, this bill will not be able to help everyone, but like much of life's endeavors, you can't have perfection, only attempts at it. This bill is a good step forward."

Teresa said she feels the most important outcome of the bill "is seeing a bond created by a group of folks who care, really care, about the needs of families with special needs. I've been able to meet several families from Bismarck and we have shared our tears, joys and stories with each other through our joint effort to make this bill a reality. "