Is March really over and April here? So hard to believe since the time has gone by fast! MNCDHH staff and community advocates worked hard last month on getting our bills passed into law. Here are a few photos of some from our work in March.

There will be more updates coming soon, including a legislative update and a 2019 Lobby Day wrap up in both American Sign Language (ASL) and English. Watch for those!

Both Kody Olson and Eric Nooker testified in support of SF 2004 on March 12, 2019.

Kody's testimony: "My name is Kody Olson and I am speaking on behalf of the Minnesota State Council of Disabilities to support SF2004. We are part of the Disability Agency Forum, a group of agency divisions, councils and commissions that work on cross-disability issues to address barriers citizens and state employees with disabilities face. 

People with disabilities face the highest unemployment rates in the country. They are eager to be part of the workforce. Governor Dayton signed Executive Order 14-14 and we were able to go from 3.8% of state employee with disabilities to 7% last year. We strongly support this bill. Having such a large percentage of people with disabilities leave state government is alarming and we need to have a study that is led by people with disabilities and a plan to ensure we are able to retain employees with disabilities. We need to gather more information to see what we are doing well and how we can improve by the changes to the affirmative action plan.

Part of Eric's testimony: "Earlier today there was a discussion about the workforce shortage. There is an untapped pool – people with disabilities. I want to see more people with disabilities who have so much to contribute, and want to contribute, as state employees. I want the state to have a level playing field, and others to have the same positive experience that I have had as a state employee with disabilities. I urge you to support the study that will help retain state employees with disabilities, define which disabilities qualify for non-competitive appointments, and increase accountability and transparency by strengthening the state affirmative action statutes. Let’s learn how we can recruit and retain the talent needed to address the workforce shortages in the state."

Susan Lane-Outlaw (Executive Director of Metro Deaf School), parents Laura White and Sara Klarstrom, and Senator Carla Nelson met to discuss the Metro Deaf School bill on March 14, 2019.  

Andrew, Sally, and Mike Prouty testify in support of inserting the definition of intervenor into state law in front of the Minnesota Senate Committee on Human Service Reform Finance and Policy on March 15, 2019. 

Here is part of Sally's testimony: My name is Sally Prouty and I was here in the early 1990's asking for funding to support Interveners in the home or community for children who are deafblind. Our son, Andy's success is directly linked to his having Interveners. Andrew is DeafBlind, lives independently, works full time in competitive employment and recently graduated from Metro State University. Interveners have helped scores of children who are deafblind. Now I am asking for a definition of Intervener to help the approximately 400 children in Minnesota who have combined vision and hearing losses. A definition for Interveners would help: 1. Make expectations of the role of Intervener clear to families and the state. 2. Help influence national legislation that will make interveners part of the national delivery system. 3. Lead to a definition and certification in educational settings."

Here is part of Andrew's testimony: "My name is Andrew Prouty and I am DeafBlind. I live independently and have worked full time for the federal government or the last 18 years. I recently graduated with a Bachelors Degree from Metro State University. Please support adding a definition of interveners to Minnesota law. This way more people would understand how interveners work and make the world more accessible for deafblind children. Thank you."

Emory David Dively and former Commission member Patti Morelli Teachout, one of the lead parent advocates who helped to get the hearing aid insurance for children under the age of 18 passed, testified in support of HF 486, the bill to get hearing aids for adults 18 and older covered under the same policy. This happened on March 15, 2019.

Here is part of Emory's testimony: "The Minnesota Commission of the Deaf, DeafBlind and Hard of Hearing hosts a cross-agency, cross-sector task force on age-related hearing loss. The Commission is on its second task force working on proposals to guide us for the next several years. This issue, the cost of hearing aids, has been the primary issue our task force and the Minnesota Commission hears about every time we collect feedback. The Commission is committed to improving the people of Minnesota’s access to hearing aids. Nearly 20% of all Minnesotans have a clinically significant level of hearing loss. Hearing aids are needed for Deaf, DeafBlind, Hard of Hearing, and hearing people who begin to lose their hearing from noise pollution, age, or medical conditions. Despite costing $2,000.00 to $4,000.00 for a pair (which need to replaced every 3-5 years), the vast majority of Minnesotans have no health insurance coverage to help with these out of pocket costs. This means that many people who need hearing aids are not getting the help they need in college, to be productive and successful at work, to connect with their families, and to age in a healthy way. People desperately look to grants, charity or family to help pay for these expensive costs—some use old, recycled hearing aids. We know that people who lose their hearing as they age are 2-5x more likely to develop cognitive decline and dementia – and are more susceptible to falls, depression, and other serious issues – if they do not get hearing aids."

Here is Patti's testimony: "I am the mother of two adult children. My son has a bilateral hearing loss. Sixteen years ago when my son was five years old, I opened my door to an incumbent candidate who was door knocking. He asked for my vote and asked if I had any concerns. I invited him in and for two hours in tears told him how my husband and I were struggling financially because of the $4000 hearing aids we had to pay for our son. We were told that his hearing loss would fluctuate and that we would have to purchase new hearing aids every two to three years. We had two young children. We had to take out loans to cover the cost. We didn’t know how we would juggle the costs of mortgage payments and hearing aids. Insurers told us that hearing aids were ‘cosmetic’ - we couldn’t get insurance coverage. There was no insurance mandate in the state. Soon after Senator Wiger introduced a bill that became MS62Q.675. I had no experience advocating at the capitol but found another mom with twin boys who needed hearing aids. She and I quit our jobs from January through May 2003 and became citizen advocates to get the bill passed. We worked closely with the Commission of Deaf, DeafBlind and Hard of Hearing. We worked with other moms with kids who had hearing loss and got the bill passed. We were able to successfully argue that hearing aids are not cosmetic, but an essential medical device needed to prevent the serious, the permanent consequences of untreated hearing loss. That it cost less to cover the cost of hearing aids than the cost to society of social, emotional and educational delays caused by the lack of coverage. Here I am, fifteen years later. The bill was a success. My son has been able to benefit from the coverage in his elementary and secondary education. He has a full social life and did well in school. Now he is an adult in college and does not have insurance coverage. He needs hearing aids just as much now as he needed them as a child."

On March 19, 2019, several representatives of Minnesota Hands & Voices and the Deaf Mentor Family Program testified in support of the EHDI bill. From left to right are Laura Godfrey, Mary Hartnett, Representative Heather Edelson, Linda Murrans, and Danelle Gournaris. 

Here is an excerpt from Laura's testimony: "We’re asking you to renew HF910/SF1021 which is to the renewal of the Newborn Hearing Screening Advisory Committee. When my son was born the average age of identification of a child with a hearing loss was three and a half years old. Because of the work of this committee babies get a diagnosis of hearing loss from a medical provider at close to 3 months. Since 2007, the Newborn Hearing Screening Advisory Committee has brought together professionals, parents, and advocates that have a stake in improving Early Hearing Detection and Intervention (EHDI) systems; they wouldn’t all be in the same room if we didn’t have the committee- we learn from each other and monitor and continuously improve the system. Because of our work, Minnesota has one of the best systems in the country. Because of it, we have strong standards and policies. The work of the committee needs to continue."

Here is an excerpt from Linda's testimony: "Minnesota was late in its passage of the newborn hearing screening mandate. We need to continue to track and build out the system. Newborn hearing screening processes are still evolving. We are identifying babies earlier as a result of newborn hearing screening mandate. In fact, I just identified a 3 week old with hearing loss yesterday. On the other hand, I identified a five-year-old with hearing loss earlier this week; some are still falling through the cracks. Our committee measures not only the number of babies screened at birth, but how many parents follow up for a referral and get a diagnostic audiological evaluation, and early intervention services. We have workgroups that develop protocols for pediatric audiologists, primary care providers, and otolaryngologists. We ask that you approve the extension of the life of the committee so we can continue to improve our newborn hearing screening and early intervention system. We need to continue to work to make it better and to ensure that children are screened and make it to diagnostics and receive early intervention by six months of age so they can achieve developmental milestones. Thank you for giving me the opportunity to testify."

Here is an excerpt from Danelle's testimony: "The amendment adds Deaf Mentors to the advisory board and I am here to explain why it’s important. Deaf Mentor Family Program focuses on the communication needs of families with children who are deaf and hard of hearing from birth to age 6. The Deaf Mentor Family program assists these families by providing instruction in American Sign Language, early visual communication methods, and Deaf Culture, through a trained Deaf Mentor who is Deaf or Hard of Hearing at the family's home environment. Deaf mentors have been chosen based on their fluency in American Sign Language, their ability to communicate easily with hearing families, their comfort with young children, and their ability to support family decisions. The Deaf Mentor sessions are provided to the family with Deaf or Hard of Hearing children for 1.5-2 hours weekly sessions for 2 years. When the bill passed in 2007, they were a small grant program. Now Deaf Mentors are written into statute as part of the EHDI system. Adding DM to the advisory committee would strengthen the monitoring and tracking process we have in place and add visual language acquisition. The advisory committee could add guidelines for visual language acquisition. Because of changes that were made in the federal EHDI reauthorization law, the federal funder for state EHDI systems, HRSA, will add reporting requirements for visual language acquisition. Minnesota is ahead of the game because we have a funding mechanism in place that covers the cost and a system in place. They need to be integrated into the system and made part of the Advisory Committee"

On March 27, 2019, MNCDHH's board member, Jamie Taylor, meets with Governor Walz’s office to advocate for stronger provisions in the Governor's new Executive Order on state employees with disabilities.

Commission board member Xavier Arana testifies before the Senate Energy and Utilities Committee for Senator Senjem’s bill that increases funds for MNCDHH on March 27, 2019. Fellow board member Jamie Taylor is also seated at the table.

Here is part of Xavier's testimony, "The Commission was founded in 1985 and has 15 Governor-appointed members. Eight are regional advisory members and 7 are at large members, the majority are deaf, deafblind or hard of hearing. Every five years we convene citizens to develop a strategic plan to overcome communication barriers identified by Minnesotans who are deaf, deafblind and hard of hearing, 20% of the state’s population. Each meeting requires interpreters, tactile interpreters for deafblind and captioning. Materials for meetings with deafblind members need to be brailed. News alerts and our website content are produced in both English and American Sign Language. This requires a great deal of coordination and planning. But the results have been worth it. People with hearing loss have greater access to government services, and improved employment, education and health outcomes. Over 70 pieces of legislation have been passed in the past 17 years. This year we have eight bills that we are leading, two at the request of state senators Senator Senjem and Senator Westrom. You have in your packets more detailed examples, but I will mention a few. You experience some of the results of our advocacy work every day. All of the rooms in the Minnesota State Senate Building have loops for people with hearing aids and all of the floor sessions and televised committee hearings are captioned."

Kody Olson, Representative Frank Hornstein, and Anne Sittner Anderson supported the bill to study the state's ability to retain employees with disabilities in a hearing on March 27, 2019. Rep. Hornstein made some important points, "This bill will address a problem we have as a state. 56% of state workers leave state employment after a year. By contrast, only 9% of state employees without disabilities leave state employment. We have a serious employee retention issue and we need to address it. Why are people with disabilities leaving at such an alarming rate? An estimated 1 in 5 Americans, nearly 56.7 million, live with a disability. While expressing an ability, desire and willingness to work in the community and contribute to the economy, many adults and youth with disabilities experience significant barriers to employment. Despite the passage of the ADA people with disabilities still experience unemployment rates far above the national average, and the percentage of people with disabilities participating in our workforce is far below the rate for people without disabilities. According to the U.S. Department of Labor’s Bureau of Labor Statistics, only about 20 percent of people with disabilities participate in the workforce compared to about 70% percent without disabilities, and the unemployment rate for people with disabilities is close to 9 percent, compared to about 3% percent for people without disabilities."

Lobby Tuesday/Thursday took place on March 28th! Here are Rachel Eggert and Kelsey Dahl practicing how to meet with their legislator with Emory K. Dively.

Representative Ruth Richardson meets with Eric Nooker and Kelsey Dahl as a part of Lobby Tuesday/Thursday.

Jaemi Hagen participated in Lobby Tuesday/Thursday with Emory Kevin Dively. Here they are standing with Representative Mohamud Noor.