Some gains, but much work remains at the state capitol

The Minnesota Consortium for Citizens with Disabilities (MNCCD), like many other groups, is waiting to see what emerges from the upcoming legislative special session. There are accomplishments to be proud of.

Seizure Smart Schools would improve safety of students by increasing access to seizure action plans for students with epilepsy and seizure response training materials for staff. This bill was bolstered by strong support from advocates and legislators. It got through both education and conference committees.

We’re waiting to see how budget negotiations and larger political conversations play out. We will continue advocating for this important legislation that empowers students living with epilepsy to feel safe in school and reach their full academic potential. Thanks to Mollie Clark and the amazing team at Epilepsy Foundation of Minnesota for spearheading the grassroots effort on legislation.

“As a parent, I don’t want to be scared… I want to be assured that my child’s school is educated…and prepared for a seizure,” said Trisha Zeller, mother to a 13-year-old with epilepsy.

Cassie’s Law, another bill championed by MNCCD members, would allow judges to order neuropsychological evaluations of people with a history of stroke, brain injury or fetal alcohol spectrum disorder prior to sentencing. This would improve outcomes for people in the criminal justice system. The bill has been in  the works for the past few years and has strong support.

We hoped much more would be accomplished, including an accessibility package to improve accessibility for people who have neurological, sensory or intellectual disabilities. SF1348 or HF 139 would have modified sensory accommodations provided in public spaces, but wasn’t acted upon. Nor was SF 1349, to establish accessibility standards for emergency shelters. SF 1556, requiring large events to provide sensory-friendly accessibility plans during the permitting process, and SF 1961, to provide accommodations for parents of disabled children in public schools, also languished.

We had hopes for a package of bills to transform disability services and supports to address racial inequities, promote equitable access, and respect individuals’ informed choice as they build belonging in community through competitive integrated employment, homes of their choice, and self-direction.

Also sidelined is the Spinal Cord and Traumatic Brain Injury Research Grant Program, supporting spinal cord and traumatic brain injury research.

Another disappointment is that no changes were made to enhance operations of the Minnesota Rare Disease Advisory Council.

We also want expansion of the definition of brain injury, to allow persons affected by fetal alcohol syndrome to be eligible to apply for the brain injury waiver.

Caregiver compensation is another disappointment as needed Personal Care Assistance (PCA) reforms didn’t pass. SF 497, a bill meant to stabilize PCA rates and address the workforce shortage, didn’t get through the Senate. Nor was there significant Senate action on the homecare workers and clients collective bargaining agreement or to compensation for services provided by a parent or spouse. A directive to the Department of Human Services to work with stakeholders to create a plan to ensure that Minnesotans who have disabilities can access individualized direct support during hospitalization fell short.

Childcare for children with disabilities’ access expansion grants also didn’t get through the regular session.

While we are disappointed that our legislative priorities didn’t move out of committee, the grassroots advocacy spurred by MNCCD’s work is very encouraging. We are encouraged by the strong collaboration that led us to this point, especially during this difficult year. MNCCD is hoping to continue this momentum into the upcoming special session and the next full legislative session to ensure that Minnesota is a national leader in promoting and protecting the needs of disabled residents while promoting diversity, equity and inclusion initiatives. Together, the MNCCD and our member organizations will continue to work tirelessly for the well-being of all Minnesotans.

We want to thank everyone who attended one of  our Tuesdays at the Capitol or participated in a Let’s Talk session with the Minnesota Department of Health and representatives from Gov. Tim Walz’s office.

What are we looking forward to next session? We are excited to work with our member organization, Gillette Children’s Specialty Healthcare, to propose first of its kind legislation. The Rare Disease Access Bill would ensure that a person enrolled in a health plan could receive needed services related to the diagnosis and treatment of a rare disease or condition without access restrictions or greater financial burden for going out-of-network. Research on this  bill is ongoing.The summary was prepared by Annika Grassl, MNCCD intern