Forum: ‘We Can’t Go Back’

Bonnie Jean Smith is a parent of adult children with autism and a member of the Minnesota Governor’s Council on Developmental Disabilities. The Council recently hosted a town hall at ICI for staff members of Minnesota’s U.S. Senators and two Members of Congress. Fearing for her children, Smith challenged legislators to oppose federal cuts to services for people with disabilities.

The Minnesota Governor’s Council on Developmental Disabilities held a town hall on Wednesday at the University of Minnesota’s Institute on Community Integration to listen to people with disabilities, their family members, and others from the Greater Minnesota area describe how recent actions to cut Medicaid services and dismantle federal agencies responsible for upholding disability legislation are affecting them.

Staff members of Minnesota’s U.S. Senators, Amy Klobuchar and Tina Smith, and staff of Representatives Kelly Morrison and Betty McCollum attended the meeting, listening to the personal stories and pleas for action from people with developmental disabilities, their family members, and those who support them to live their lives in the community rather than in institutions. Each staff member reiterated their legislators’ support for essential disability services.

Joel Liestman, a Council member and advocate with several disability-related organizations in addition to being the parent of a son with a genetic condition called Williams syndrome, pressed the staff members to more forcefully respond to the recent federal actions. He shared that he has heard from other parents who fear protections such as individualized education plans (IEPs) will no longer be enforced.

“Please do not mistake my courtesy for acquiescence,” he said before sharing his outrage that special education and other disability services are facing cuts and the closure of entire government departments charged with overseeing federal disability protections.

“[My son] has thrived because of a federal system that declares all students are entitled to a free and appropriate education and ensures accommodations for those who learn differently,” said Liestman. “We’re told the grand plan is to turn education back to the states, so this shouldn’t be a big deal, but I know we’re only a few votes away from special education programs being gutted.”

He asked staffers to convey the urgency of making people aware that under these cuts the government does not have the capacity to implement disability law, and to loudly oppose legislators who go along with plans to disrupt services.

“If you do nothing, if your bosses do nothing, Medicaid and Medicare and Social Security will also be gone,” he said.

Another Council member, Bonnie Jean Smith (pictured), a parent of adult children with autism, shared that she has been having nightmares about the recent shuttering of the Department of Education and the Administration for Community Living, and challenged the group to take action.

Jillian Nelson, policy director for the Autism Society of Minnesota and a former Council member who is an autistic adult, also urged legislators to take forceful action now.

“I look around this room and I see people from all walks of life with all types of disabilities. I see family members, and I see allies. Do you know who I do not see in this room today? I do not see a single billionaire. We are talking about cutting $880 billion from a system that affects 99% of America to protect tax benefits for 1% of America, people who will never worry about whether or not they can afford support to get out of bed if they become disabled or people who will never worry about whether or not they’re going to be able to get to their job,” Nelson said.

“I watched Corey Booker [deliver a 25-hour speech in the U.S. Senate] and would like to see Minnesota do the same. You are all on the Hill. You all have the same capability of making a stand, of taking a large initiative to do better for Minnesota. We come from a long line of leaders who believed in doing better. I believe Paul Wellstone said, ‘We all do better when we all do better,’” Nelson said, referring to the late U.S. Senator and academic.

“It’s time for our [public officials] to do better for us,” she said. “Minnesota has long been what the rest of the country looks to for disability standards. We can’t afford to go back decades just to line the pockets of a few people.”

Other members of the Council from around the state shared their own stories, as did several employees of the Institute. Many ICI staff members have disabilities and/or family members with disabilities.

Authorized under the Developmental Disabilities Assistance and Bill of Rights Act, the Institute collaborates with the Council and the Disability Law Center to uphold disability rights and opportunities.

ICI’s initiatives include the Minnesota-Autism and Developmental Disabilities Monitoring Network (MN-ADDM), funded by the U.S. Centers for Disease Control and Prevention. This network tracks the prevalence of autism and other developmental disabilities. Its work plays a crucial role in early identification for better service interventions and in the development of public policy and initiatives in the education and healthcare systems.

Another key program, the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MN-LEND), equips health, education, and human services professionals with interdisciplinary training to address the complex needs of children with autism and developmental disabilities. More than 300 fellows from the Minnesota LEND program have graduated, with many taking leadership roles in nonprofits, government agencies, and higher education in order to drive meaningful change in their communities.

Supporting these efforts is not just a matter of policy but is a fundamental commitment to civil and economic rights and human dignity, said Jennifer Hall-Lande, a senior ICI investigator who leads the MN-ADDM project.

She urged staffers to uphold this commitment and not let disability services return to outdated models of care.

“This work is vital, and it is at risk,” she said. “The cuts to the Department of Health and Human Services, National Institutes of Health, and the Centers for Disease Control and the destabilization of the Administration for Community Living are a threat to money that has already been appropriated.”

She also noted the Institute’s exceptional return on investment. Leveraging its nearly $600,000 in annual core federal funding with fee-based consulting services, state contracts, strategic partnerships, foundation and federal grants, and individual giving, ICI generates significant additional research, training, and community outreach that is used throughout and beyond the disability community.

Restructuring the Department of Health and Human Services and dismantling the Administration on Community Living are clear steps backward and will force staff reductions that limit ICI’s ability to conduct essential research and training, ICI leaders shared at the event.

University Centers for Excellence in Developmental Disabilities, including ICI, were created during the Kennedy Administration and have received bipartisan support for decades, Hall-Lande said. Across political lines, leaders have continued to recognize the value of people with disabilities living and working in, and contributing to, their communities.

In addition to the MN-ADDM and MN-LEND work, ICI tracks and analyzes national data on long-term services and supports as the leader of the Residential Information Systems Project, operates the TeleOutreach Center to bring timely support to individuals with developmental and mental health needs, and is home to the National Center on Educational Outcomes, a national leader in designing assessments and accountability systems that include students with disabilities and English learners.

At the heart of community living and participation for individuals with disabilities is the direct support workforce. ICI works to train, support, and recognize this workforce by developing ethical standards and competency-based training for direct support professionals (DSPs).

Continuing to professionalize DSPs’ role and to advocate for raising their chronically low wages is critical, noted Sarah Hall, a former special education teacher and professor who joined ICI as a researcher and has a brother, Charlie, with multiple disabilities.

“ICI did things that were important for my students, and it does things that matter for people like my brother,” she said. “This work actually matters in people’s lives.”

Sumukha Terakanambi, a Council member with muscular dystrophy, shared how various home and community-based services have given him greater independence and improved his quality of life.

“These services enable people with disabilities to live in their communities instead of institutions,” he said. “We cannot afford to go backward.”