Twenty-four Minnesotans comprise the 2020-2021 Partners in Policymaking class. The participants, who were chosen from a statewide pool of applicants, receive eight months of leadership training.
Participants include adults with disabilities and parents raising children with developmental disabilities. Partners in Policymaking was created by the Minnesota Governor’s Council on Developmental Disabilities. “The goal is to develop leaders statewide to partner with school systems, medical and business communities so all individuals with disabilities are supported as they become self-confident, independent and contributing citizens across the state,” said Colleen Wieck, executive director of the council.
The program began in 1987. Over the years more than 27,000 people from around the world have benefited from the training. The 2020-2021 Minnesota participants represent a wide range of backgrounds and life experiences.
Parents want resources, policy roles
Partners is Policymaking has long been a resource and training hub for parents of children with disabilities. This year’s class is no exception, with several parents whose children have a wide range of disabilities. Some families have had to relocate to find services for their children.
Corina Ficzeri, Cannon Falls, has a school-age child with disabilities. Ficzeri is completing a degree in early childhood education and youth development and interns at an elementary school. She is interested in inclusion for her child and wants to be involved in statewide educational policy and best practices.
Carly Schecter, Apple Valley, has two children with autism. As a clinical social worker she is committed to raising her children to have their best independent lives. She is concerned about the quality of school programs and long waiting lists for many private services.
Cora Holland-Koller, Arden Hills, has a son with Down syndrome. Holland-Koller wants to learn more about the policies that directly impact her son, with a focus on education. She wants to use skills gained from the program to better advocate for her son and for others.
Jodi Copa, Brooklyn Park. Copa has two daughters with cognitive, emotional and behavioral disabilities. Her daughters require continuous care and prompting to complete daily living habits and do schoolwork. Copa hopes to gain a better understanding of services and which are appropriate for her children.
Rachael Ryan, Burnsville, has a teenage daughter and son with autism and body regulation difficulties. Ryan herself has severe hearing and mental health disabilities. Her experience with services for her children is mixed. Her goals are to improve special education distance learning and gain skills in advocating for her children and herself.
Sabeen Zehra, Burnsville, has a daughter with Down syndrome and other physical challenges. Zehra is interested in school and sports inclusion for her daughter. She is working to remove the stigma around developmental disabilities in South Asian communities. She wants to be the part of the change that those with disabilities are treated with equal rights and is pleased to gain the tools to become an advocate.
Adrienne Payne, Duluth, has a non-verbal, teenage son with autism. Trained as a behavior therapist, she quit her job and moved to find the best supports possible for her son. Payne believes his inability to communicate could leave him as a victim for the rest of his life, but is determined to give him and others like him the best life possible.
Deqa Farah, Eagan, has a preschooler with child with multiple disabilities, who with his family’s help is learning through therapies, supports and assistive technologies. Farah is concerned about county services and school inclusion for her son. Through Partners she hopes to build positive relationships with lawmakers and decision makers to benefit the Somali autism community.
Chandler Hill, Farmington, has a son with receptive and expressive language disabilities. Hill is interested in learning more about school inclusion and access to services. Surprised by some cold-hearted responses to disabilities, she has learned to slow down to her son’s pace and be grateful for small steps taken together. With Partners she hopes to gain skills to be an advocate for other families raising children with disabilities.
Melissa Schlemmer, Forest Lake, has a son with PMM2, a congenital disorder of glycosylation. She works with a non-profit to help families like hers purchase equipment that insurance doesn’t cover. She worries about her ability to care for him over time, and to prove his worthiness to the world. Schlemmer’s goal is become a stronger advocate for her son and to understand the bigger picture of disabilities.
Kari Stordahl, Fridley, has a son with multiple disabilities. She is involved with parent child interactive therapy at his school and is interested in other services. She values her role in being her son’s advocate but is willing to learn more to guide him to a successful life. She is excited to meet other parents who have similar struggles.
Tiffany Goodchild, Hugo, has a son with a severe form of spastic quadriplegic cerebral palsy, requiring G-tube feeding and nursing care. Her family went through a long process to get help for her son. Goodchild is a psychologist, and founded a non-profit to provide resources and support for families raising a child with severe neurological disabilities. She is speaking up about the significant support needed during the first year of caring for children like her son, and to stop the inconsistencies of benefits between counties, and issues with regulations for homecare nursing.
Pam Crawford, Corcoran, has a teenage son with Down syndrome who has outstanding social skills and a desire for new challenges. Crawford has intentionally networked with other parents on issues of inclusive education and developing friendships with other children. She is interested in competitive work opportunities for her son’s future and meaningful community involvement.
Karen Keenan, Pine Springs, has a daughter with Down syndrome. Keenan is interested in learning more about school inclusion, advocacy and state and federal policies. She’s the former chair of ConnectWC, a 2013 Mahtomedi Ted X Speaker “What if we created a Community of Belonging,” and co-organized Chloe’s Cannonballs, her daughters’ team, for the Polar Plunge. She’s the new executive director of Valley Friendship Club, which provides opportunities for children and young adults living with disabilities.
Sharon Caswell, Prior Lake, has a son with Down syndrome. She believes multiple therapies could benefit him, but many resources are in short supply, such as service dogs and therapies covered by insurance. Caswell wants improvements in school/educational inclusion, particularly post-secondary opportunities, and access to meaningful work opportunities. She is an advocate for everyone with special needs.
Rural areas are a focus
Some parents join the program because of the challenges they face as families living in rural areas, far from resources.
Lindsay Heinecke, Appleton, has a son with disabilities. Limited area resources mean that the family must travel for therapy, testing and other services. Heinecke wants to learn advocacy skills to help other families in rural areas with similar challenges, and to find resources for her son as he grows up.
Karissa Benoit, Deer River, has a son with Down syndrome. Living in a rural area requires at least a one-hour drive for services. Often Benoit has challenged assessments and asked for additional tests. Benoit will use her training to help overcome barriers and speak up for other parents in her community who want additional help for their children.
Melissa Karsky, Finlayson, is the full-time caregiver for her teenage daughter with intellectual disabilities. Karsky is studying human services full-time and would like to learn more about a continuum, of services for her daughter, and for others in the community.
Crystal Henderson, Red Wing, has two children with multiple disabilities, which makes daily life a challenge for their family. With few resources available, Henderson is desperate for respite care, crisis care and family therapy services. Henderson wants to find better solutions for her children to be enrolled in transition services and job counseling. Educating others about disabilities and neurofibromatosis is also important to her.
Marie Lego, St. Cloud, works at Connect Ability of Minnesota specializing in community outreach and transportation. She’s also a single parent of a son with multiple disabilities. While he has benefitted from an Individualized Education Plan, he still has struggles. Lego and her son face challenges together. She is interested in learning more about waivered services and school inclusion, and using her Partners skills at work and for her son.
Self-advocates find a voice
Many people with disabilities have blossomed in the Partners program, learning to speak for themselves and their needs. Many have gone on to have a regular presence at the state capitol and in advocacy groups. Two of the self-advocates this year are from Merrick, Inc.
Amber Roberts, Roseau, has a mild case of fetal alcohol syndrome disorder (FASD) that leaves her with anxiety, depression and attention-deficit hyperactivity disorder. She was successful in her work as a school paraprofessional but has concern for her siblings with more severe FASD and are bullied. Roberts’ mother suggested applying for Partners due to Robert’s strong compassion for others.
Jonathan Murray, Roseville, has autism. He is specifically aware that his mind processes the world around him differently than others. He uses voice recognition technology and specialized supports to function more efficiently. Murray has many interests, ranging from hunting and fishing to programming and design. He’s a volunteer and board member for Twin Cities Maker, a community workshop where people share and learn.
Maria Raasch, St. Paul, lives with multiple disabilities. She attends the Merrick day training program, and is a strong advocate for school inclusion and bullying prevention. Naturally shy, she is proud of her role with the Ambassadors for Respect and taking on the challenge of speaking up and voicing her concerns. She is involved with her church and enjoys helping others. She wants to learn more about the history of people with disabilities, becoming an agent for change, and speaking up for those with disabilities.
Heidi Storm, St. Peter, is a self-advocate living with multiple disabilities including autism. She participates in adult rehabilitation mental health services and case management. Storm enjoys community action groups. She is looking forward to learning from others how to increase self-determination and community connections.
Kellianne Blood, White Bear Lake, is a self-advocate who works as a janitor at Merrick in Vadnais Heights. She is a presenter for Ambassadors for Respect where she talks to fourth grade students about bullying prevention, inclusion and respect. Blood is especially interested about making the voting process inclusive and less overwhelming for those with disabilities.