2019 Disability Day at the Capitol was a time to discuss diverse needs

Calls for inclusion and independence rang out as hundreds of self-advocates and their allies gathered February 19 for Disability Day at the Capitol. The first of the Minnesota disability community’s big legislative rallies drew people determined to make changes in their lives and the lives of others.

“You have the voices that matter,” said Jillian Nelson, community resource and policy advocate for Autism Society of Minnesota (AuSM). “We have so much to say.”

Nelson and other speakers urged those present to tell their stories to state lawmakers as they work for changes in policies and programs. “Our voices will make us the captains of our own destinies,” she said.

While the familiar theme of telling one’s stories to legislators was often repeated, the 2019 Disability Day took on a sense of urgency. The rally and other upcoming rallies become more important not just with legislative action deadlines coming up. The financial needs spelled out come in the face of the state’s revised economic forecast, which was released February 28.

Minnesota has a roughly $1 billion surplus. While that may encourage those seeking additional funds for many programs, it is worrisome that the surplus is one-third less than the nearly $1.5 billion budget surplus projected in November. Slower economic growth and lower than expected tax collections have played a role in the downward trend.

Many disability rights advocates argue that with any state surplus, programs that have languished for years need support. Gov. Tim Walz’s proposed budget, which was released in mid-February, had much for community members to like in terms of support for health care, special education and mental health. The $49.5 billion biennial budget price tag for the next two years. It includes a boost for Minnesota schools, local communities and health care programs, and would continue a health care provider tax that is to sunset in 2020.

But the budget, which met strong objections from Republicans, is a long way from reality. And with legislation weeks away from floor votes, disability advocates aren’t wasting any time.

So many people showed up for pre-march preparations February 19 at the Minnesota Department of Transportation (MnDOT) cafeteria, organizers ran out of poster board. Advocates used the remaining supplies to make smaller signs before they gathered for the march to the capitol. The line of marchers at one point extended from the MNDOT building all the way to the sidewalk leading to the capitol.

The rally was a chance for several groups to promote the legislation they are hoping to pass this session, including the workforce crisis, traumatic brain injuries, fetal alcohol syndrome, special education, parental fees, spend-downs and more. Speakers told stories of their personal experiences navigating health care and human services systems, paying high fees or struggling to find proper care.

Several legislators attended to let people know that their voices are being heard and that they are working to address concerns on an array of disability issues. “We need to make the disability community a priority … It’s time to say, damn it, listen to us! Support us! Fund us!” said Rep. Nick Zerwas (R-Elk River). His speech was met with loud cheers.

Echoing Nelson, Rep. Tina Liebling (DFL-Rochester), said, “We are experts about our own lives and our own struggles.’ She urged those present to share their stories with state lawmakers.

Liebling chairs the House Health and Human services Finance Committee. She said lawmakers understand the deep concerns over funding for services and supports. While calling the challenge of addressing all of the needs “enormous,” Liebling said it’s important to make sure that people with disabilities “have services and opportunities to live their best lives.” “What happens to one of us, in a very real sense, happens to all of us,” she said.

Liebling also spoke to the need to address the direct support workforce staff shortage, which has reached the crisis stage. Of caregivers, she said, “People have to be paid in a way that allows them to support their families, too.”

Jeff Bangsberg, longtime activist and board chairman for the Metropolitan Center for Independent Living, was one of those who spoke about the workforce crisis, the need for more pay for caregivers and the need for additional regulation. “The whole PCA program is unsustainable. It is literally imploding underneath our feet.”

Another longstanding priority called out at the rally is the need for changes in the Medical Assistance-Tax Equity and Fiscal responsibility Act (MA TEFRA) Program. Parents and autism community activists Maren Christsenson Hofer and Kelly Kausel described how their families struggled with the fact that while MATEFRA can be a great help when private insurance doesn’t cover needed services and support, high parental fees continue to force tough choices for families. “Families have to ask; do they pay their rent or mortgage, or do they pay their parental fees?’ Hofer said.

Kausel’s family has cashed out 401ks,spent an inheritance and maxed out credit cards trying to cover the high parental fees, so that their son Noah can stay in the program and receive needed services. “We and other families live paycheck to paycheck,” Kausel said.

This month marks decision time for many bills as committee deadlines start to kick in. It can be a tough time as many bills get related to the “wait until next year” pile.

The first 2019 deadline is midnight Friday, March 15, when committees must act favorably on bills in the house of origin. The second deadline, Midnight Friday, March 29, is when committees must act favorably on bills, or companions of bills, that met the first deadline in the other house.

The third deadline is midnight, Friday, April 12, when committees must act favorably on major appropriation and finance bills.

Walz, House Speaker Melissa Hortman, and Senate Majority Leader Paul Gazelka have agreed to additional deadline goals. The House and Senate will pass all major finance bills off their respective floors and leadership will appoint conference committees by Wednesday, May 1. Walz and leadership will provide fiscal targets to the chairs of conference committees on major finance bills by Monday, May 6. Conference committee chairs shall provide completed conference committee reports to the house of origin by Monday, May 13.

The deadlines don’t apply to House committees on Capital Investment, Ways and Means, Taxes, or Rules and Legislative Administration, nor to Senate committees on Capital Investment, Finance, Taxes, or Rules and Administration.

Interested in a bill? Looking for a senator or representative? Want to see a hearing video? Go to www.leg.state.mn.us.