Disability Day highlights several key needs

With the 2018 Minnesota Legislature in full swing, disability groups are making the case for a wide range of policy […]

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With the 2018 Minnesota Legislature in full swing, disability groups are making the case for a wide range of policy and spending bills. The calls for more spending for needed supports and services is bolstered by the budget forecast released at the end of February. A surplus of $329 million is projected. A deficit had been predicted in December 2017, which was the state’s first in five years.

Who benefits from the modest surplus remains to be seen. At a news conference Minnesota Management and Budget Commissioner Myron Frans cautioned that the figure is less than 1 percent of the state’s total two-year budget. Frans and Gov. Mark Dayton also said a positive balance shouldn’t be taken for granted and that spending needs to be looked at carefully. Dayton’s budget recommendations will be announced March 15.

A lot of factors could affect what is ultimately allocated this session, including the national economy, federal tax code changes and competing state financial needs. One issue that has to be tracked is if federal tax law changes provided a one-time or ongoing benefit.

Disability advocates contend their needs have been put off for years and can no longer wait. A large crowd from around the state descended on the state capitol February 27 for Disability Day at the Capitol. Waving signs, chanting and cheering, the crowd delivered the message that they want change.

The Arc Minnesota, Minnesota Consortium for Citizens with Disabilities (MNCCD), Minnesota Council on Disability, Autism Society of Minnesota, Minnesota Council on Disability, Advocating Change Together and Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) were day sponsors. More than 450 people filled the capitol rotunda, including about 130 from MOFAS, which had its own gathering earlier that morning.

Noah McCourt, who chairs the State Council on Mental Health subcommittee on children’s mental health issues, urged those present to meet with legislators and outline their needs. “I’m here today because self-advocacy is essential,” he said. He and other speakers urged everyone to let state lawmakers know their needs. Several legislators were on hand to offer support and encouragement.

“We need your voices here, and your voices need to be heard,” said Sen. Kent Eken (DFL-Twin Valley). He continues to focus on the need for a state constitutional amendment that would dedicate a funding stream to long-term care.

Amy Zellmer, who lives with traumatic brain injury, emphasized the importance of everyone sharing their stories with lawmakers. “When we share our stories, people listen” Zellmer said. “They connect with us. They learn from us. And more importantly, they take action with us.”

Speakers outlined a wide range of topics including the need for additional complex care funding, more attention to Consumer-Directed Community Supports (CDCS) and inclusion of fetal alcohol syndrome in brain injury waiver programs.

The complex care issue is a difficult one. A group had worked in 2017 for higher wages for people who need 10 or more hours of care per day. Supporters left the capitol at session’s end thinking they had achieved their goal of higher wages for workers who provide complex care. “And then magically in the middle of the night, the bill disappeared,” said Jeff Bangsberg. He and fellow self-advocate Lance Hegland said the bill, which is technically still active, need to pass this session.

“We’d love to see a rate increase for everyone who provides care, but we need the focus now on people who have the greatest needs,” Bangsberg said.

Hegland relies on more than 12 hours of care each day. “These supports are vital to my health and safety,” he said. “These supports are critical to help me participate in daily activities, to work plus to participate in activities with family, friends and community.” Hegland said without support he and others cannot survive. But the workforce shortage makes it difficult for him and others to hire care workers.

Consumer-Directed Community Supports

One issue of focus this session is Consumer-Directed Community Supports or CDCS. Providing more access to and visibility for CDCS programs is a focus for many organizations this session. Scott Price and his family, which includes six children, live in Coon Rapids. The family has adopted special needs children. Four children are adults who live with developmental disabilities.

The Price family has used CDCS for 19 years, and it has provided a better life for their children. “I was excited when this option became available because it would increase our choices of services we could receive, and we could be in charge of our children’s services and care,” Price said. “Because of CDCS, we have been able to access a number of wonderful things for our four children who have developmental disabilities.”

“Without options like CDCS that let us direct our loved ones’ care and support, our children would be forced to live in more restricted settings, have less control over their lives, and not be integrated into the community,” Price said. “I urge our state legislators to make it easier for more families to have these options, so their children can have more independent lives, too.”

One huge advantage for the Price family is to be able to increase pay to retain direct care staff. Before that staff turnover was nine months to one year. Now they can retain staff for three to five years. Having trusted, quality staff has helped the Price family improve health and safety for their family members.

The control has also helped the Prices purchase needed specialized equipment, such as a portable ramp for their daughter Victoria. She could use the ramp for access, including access to the building where her Girl Scout troop met. “Her success in that troop was borne out when she was the top cookie seller for three years in a row,” said Price.

While the cookie sales comment drew cheers, Price made a serious point that CDCS is a lifesaver. Son Josh lives with significant disabilities but was able to live in his own apartment and hold a job. He developed a brain tumor about two years ago and had to leave his apartment. CDCS helped him lived with his family with supports, get the care he needed and get back into the workforce.


What lies ahead?

The 2018 session has been described as a “three-month sprint” in some news accounts. More disability focus days are coming up in March. Tuesday, March 13 will be busy with ARRM/MOHR Day
at the Capitol, along with Rise and other groups gathering there. Go to www.arrm.org and www.rise.org for details. NAMI Minnesota has its day to raise mental health awareness on Thursday, March 15. Got to www.namihelps.org

Remember that MNCCD’s Tuesdays at the Capitol are 9:30-11 at the Minnesota Department of Transportation building cafeteria. The lunch meetings and policy updates for members are now Tuesdays, noon-1 p.m. at the State Office Building, Room 500S. MNCCD also posts other capitol events on its online calendar, at www.mncod.org.

Bill deadlines are coming up fast.Thursday, March 22 is when committees must to act favorably on bills in the house
of origin. Thursday, March 29 is when committees must to act favorably on bills, or companions of bills, that met the first deadline in the other body.

Friday, April 20 is when committees must act favorably on major appropriation and finance bills. The deadlines don’t apply to the House Capital Investment, Taxes, Ways and Means, or Rules and Legislative Administration committees, nor to the Senate Capital Investment, Finance, Taxes or Rules and Administration committees. Dayton will deliver his final State of the State address at 7 p.m. Wednesday, March 14 in the House Chamber.

Anyone planning to visit the capitol should remember that state lawmakers are in recess for the Easter/Passover holidays from March 30-April 8.





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