Advocacy Priorities — Prior Years

2020 Advocacy Priorities

Seizure Smart Schools (SF 1953, Lang/HF 1422, Baker)

Over 3.4 million Americans are currently living with epilepsy and seizures. Of the 3.4 million, there are 470,000 children living with epilepsy in the U.S. and it’s estimated that 7,400 of those children live in Minnesota, a state which has just over 3,000 public, private, and charter schools. For students with epilepsy, it’s important that school staff are well-equipped with the tools and knowledge to provide a safe and enriching environment.

EFMN supports this legislation which ensures that school personnel are not only prepared but can recognize and respond appropriately and efficiently to a student experiencing a seizure. By bringing awareness to the entire educational community, students living with epilepsy or a seizure disorder can feel safe in school and reach their full academic potential.

Seizure Smart Schools Legislation: Action Needed in 2020

Following Kentucky’s success in passing legislation in 2018, four additional states became leaders in this national movement in 2019 by passing versions of the Seizure Smart Schools legislation: Indiana, Texas, Illinois, and New Jersey. Together, we can ensure that Minnesota joins the list in 2020.

The Seizure Smart Schools legislation was heard in the House Education committee with Representative Dave Baker, Senior Program Coordinator Jamila Pickett, and advocate and Board Vice President Trisha Zeller testifying.

Prior Authorization Reform (SF 3204, Rosen/HF 3398, Morrison)

Prior authorization is the process that many health insurance companies use to determine if they will cover a prescribed medication or service. The process often prevents or delays access to a particular treatment option that your physician feels is most appropriate for your care. People with epilepsy who experience a delay in accessing their medication, or have their medication switched, due to onerous prior authorization requirements, are at higher risk for developing breakthrough seizures and related complications.

EFMN supports increased transparency in the prior authorization process, requiring responses to prior authorization requests within 36 hours, and qualified health care professionals in the same specialty reviewing the requests.

The Prior Authorization Reform Bill passed both the House and Senate floor and was signed into law by Governor Walz.

Patient Access to Prescription Drugs (SF 1006, Nelson/HF 1257, Cantrell)

Epilepsy medications are not interchangeable, and the treatment of epilepsy is highly individualized. Medication changes, limitations, or denials can be extremely dangerous. EFMN is a strong supporter of legislation that prohibits insurers from making mid-year changes to the prescription drug coverage included in healthcare plans. This legislation prohibits insurers from forcing a patient who is currently receiving a drug therapy from changing drugs until the end of the patient’s contract year and creates a community solution for providing real-time notification for drug coverage decisions.

Expand Access to Inclusive Child Care (SF 3473, Relph/HF 3693)

Across Minnesota, parents of children with disabilities and medical complexities are struggling to access consistent, high-quality, accessible child care. By creating grants for childcare providers to establish or expand inclusive settings, we can support them in meeting children’s individual needs, alleviate constraints on the homecare workforce shortage, and allow parents to work during the day.

Investing in grants for inclusive childcare will help ensure that children with disabilities receive support alongside their siblings and peers – resulting in long-term, positive benefits for all children, and building true belonging in the community from an early age.

The Inclusive Child Care legislation was heard in the Senate Human Services Reform Finance and Policy Committee and the House Early Childhood Finance and Policy Division.

Promote Employment at Livable Wages for People with Disabilities (SF 3003, Ulke/HF 2971, Cantrell)

Enhancing collaboration across state agencies and developing recommendations to expand customized, competitive, integrated employment can help ensure that all Minnesotans with disabilities have access to meaningful employment opportunities.

EFMN supports state agencies developing a coordinated plan for supported employment of transition-age youth and individuals with significant support needs.

The Employment at Livable Wages legislation was heard in several House and Senate Committees. 

Coalition Efforts

EFMN partners with a wide range of advocacy and direct service groups to further advocacy efforts that are meaningful to the epilepsy community. Much of this work is done through formal and informal memberships in coalitions. While most of our coalition work focuses on Minnesota, we also engage in nationwide efforts in partnership with the national Epilepsy Foundation.

Patient Advocacy Coalition

The Patient Advocacy Coalition is comprised of patient advocacy nonprofits working on legislative and administrative issues important to those with chronic and complex medical conditions. Our cohort strives to ensure access to quality, affordable health care for all. Through our individual and group efforts, we advocate in favor of preserving and enhancing access to quality health care services for all Minnesotans.

Coalition COVID-19 Letter
Blue Ribbon Commission Comment Letter

Upholding the Rights of Older Adults, Patients, and People with Disabilities During the Coronavirus Pandemic

During the Coronavirus pandemic, we stand with other advocacy organizations to uphold individuals’ rights and ensure that policies create opportunities for individuals to receive appropriate healthcare, respectful support and retain authority to make decisions, exert control in their lives, and advocate on their own behalf.

White Paper | Advocate Letter to Secretary Azar and Director Severino

I Am Essential Coalition

This broad group of patients and community organizations represents millions of patients and their families across the United States. The I Am Essential coalition supports access and coverage for the healthcare needs of individuals living with chronic conditions and disabilities by advocating through public comment and sign on letters.

Comment Letter

Minnesota Consortium for Citizens with Disabilities (MNCCD)

During the 2020 legislative session, MNCCD and its members introduced fifteen pieces of legislation in the areas of inclusion and choice, autonomy and respect, equal access to opportunity and community, and access to reliable services and supports. Our coalition strives to improve the lives of people with disabilities through public policy, awareness and education.

COVID-19 Virtual Town Hall (04/28/2020)
Letter: Informational hearing for the Senate E-12 Finance and Policy Committee (08/17/2020)

Coalition for Children with Disabilities

The Coalition for Children with Disabilities is dedicated to protecting the rights and services of children with disabilities and their families. The coalition works to secure adequate funding for special education, support paraprofessional training time, decrease exclusionary disciplinary measures, and increase school-based mental health services.

This is Medicaid

Co-convened by the membership, this is Medicaid is a coalition of nonpartisan organizations advocating with people who access health care supports through Medicaid. We believe health and well-being are vital to strong and thriving Minnesota families and communities. During the 2020 legislative session, the coalition is providing member organizations with support and endorsement in addition to any responsive work needed to preserve Medicaid access.

Rev Up Minnesota

A non-partisan coalition advocating for policies that will increase the percentage of people with disabilities in Minnesota who exercise their right to vote. Rev Up Minnesota is affiliated with Rev Up America, started in 2016 to respond to the unique needs of persons with disabilities in the entire voting process.

2020 Primary and General Elections Letter

Best Life Alliance

The Best Life Alliance is a statewide coalition working to ensure that services for people with disabilities remain available, stable and sustainable. The coalition’s 2020 proposals provide options for legislators to enhance the wages and benefits of Direct Service Professionals who empower Minnesotans with disabilities to live their best lives.

2019 Advocacy Priorities

Seizure Smart Schools Training Initiative (SF 1953, Lang/HF 1422, Baker)

There are 470,000 children living with epilepsy in the U.S. and it’s estimated that 7,400 of those children live in Minnesota (Centers for Disease Control). For students with epilepsy, it’s important that school staff are well-equipped with the tools and knowledge to provide a safe and enriching environment. This legislation has three components:

  1. Specified school personnel complete seizure recognition and first-aid response training;
  2. Students have a Seizure Action Plan in place and available to school personnel responsible for the student; and
  3. Prescribed medication, including rescue medication, is administered to students with epilepsy by a trained nurse or staff member.

The Seizure Smart Schools legislation was heard in the House Education committee on March 6 with House Representative Dave Baker, Executive Director Heidi Fisher, and advocate Ruth Schmitz testifying.

Patient Access to Prescription Drugs (SF 1006, Nelson/HF 1257, Cantrell)

Epilepsy medications are not interchangeable, and treatment of epilepsy is highly individualized. Medication changes, limitations, or denials can be extremely dangerous. We are a strong supporter of legislation that prohibits insurers from making mid-year changes to the prescription drug coverage included in healthcare plans. This legislation prohibits insurers from forcing a patient who is currently receiving a drug therapy to change drugs during the contract year and creates a community solution for providing real-time notification for drug coverage decisions.

Mitchell’s Law (SF 746, Isaacson/HF 932m Moller)

Following a severe accident in 2015, Mitchell and his family came up with the idea of adding emergency contacts to an individual’s license or state identification card. This legislation creates an optional program that allows individuals to add an electronic record of emergency contacts to their license/state identification card. Records would be available to emergency responders, peace officers, and authorized emergency department staff.

Mitchell’s law is included in the recently passed transportation bill.

Rare Disease Advisory Council (SF 973, Miller/HF 684, Mann)

Helping the rare disease community starts with ensuring that patients and families have a voice in government. This legislation establishes a rare disease advisory council to advise state agencies on research, diagnosis, treatment, and education related to rare disease.

The Chloe Barnes Rare Disease Advisory Council passed both the House and Senate floor and was signed into law by Governor Walz.

Coalition Efforts

Step Therapy (SF 1026, Utke/HF 815, Acomb)

We’ve joined other organizations in supporting the expansion of Minnesota’s step therapy law, ensuring all Minnesotans are protected and have quick access to the medications they need. The Minnesota legislature unanimously approved a bill in 2018 that creates a process to allow providers to request an exception to a step therapy protocol when they believe it in their patient’s best interest. HF 815 would extend that protection to public programs such as Medical Assistance and MinnesotaCare.

Step Therapy Sign-On Letter

Expansion of Minnesota’s step therapy law is included in the recently passed health and human services bill.

Health Care Access Fund

We stand with other patient advocacy groups in supporting continued funding for the Health Care Access Fund. The program is vital to Minnesota’s health care safety-net and supports MinnesotaCare, Medical Assistance, quality improvement initiatives, and public health prevention strategies.

HCAF Sign-On Letter

The health care provider tax was preserved and made permanent at a reduced rate of 1.8%. The tax is projected to raise over $800 million during the next two years to support health programs.

Best Life Alliance (SF 6, Utke/HF 179, Halverson)

The Best Life Alliance is working to pass legislation in 2019 that takes steps to address the severe workforce shortage impacting the critical supports accessed by over 30,000 Minnesotans with disabilities to live and work in their communities.

BLA Conference Committee Letter

A new Competitive Workforce Factor to increase wages for direct support professionals (DSPs) serving people with disabilities was passed into law. This represents an investment of over $100 million in Home & Community Based Services (HCBS) over the next four years.

Special Education

As a member of the Coalition for Children with Disabilities, we are dedicated to protecting the rights and services of children with disabilities and their families. The coalition works to address problems and concerns related to special education.

Coalition for Children with Disabilities Letter

Coalition for Children with Disabilities, Education Conference Committee

The E-12 education bill includes a 2% increase in the per pupil formula each of the next two years. A new category of special education funding called cross-subsidy reduction aid is also included, providing $90 million in funding.

2018 Advocacy Priorities

Step Therapy (SF 2897/HF 3196)

On May 15, 2018 Governor Dayton signed HF 3196 into law. Implemented on January 1, 2019, this legislation created a process to allow providers to request and exception to a step therapy protocol when they believe it in their patient’s best interest. A provider may use one of the following circumstances when requesting an override:

  1. The drug required under step therapy is likely to cause an adverse reaction, could negatively impact a person’s daily life, or would be physically or mentally harmful.
  2. The patient has tried a drug required under step therapy which is in the same pharmacologic class or has the same mechanism of action.
  3. The patient is currently stable on a prescription drug selected by the doctor while on a current or previous insurance plan.

Best Life Alliance (SF2889/HF 3191)

Founded in 2014, this coalition advocates for Home & Community-based Services (HCBS). HCBS provide individuals with intellectual and physical disabilities needs-based services that allow them to contribute and stay as active and independent as possible. Although both Governor Dayton and the legislature supported the Best Life Alliance legislation, they were unable to find common ground on other items included in the 2018 omnibus budget bill. New legislation was introduced in 2019.

Chloe Barnes Rare Disease Council (SF 2786/HF 2574)

Although both Governor Dayton and the Legislature supported the Chloe Barnes Rare Disease Advisory Council legislation, they were unable to find common ground on other items included in the 2018 omnibus budget bill. The legislation was re-introduced in 2019.

2017 Advocacy Priorities

Medical Assistance Coverage of Stiripentol (SF 1221/HF 808)

Passed in the 2017 session, this legislation requires Medical Assistance to cover Stiripentol under the early periodic screening, diagnosis, and treatment (EPSDT) program when medically necessary for Dravet Syndrome, when all other available covered prescription medications have been exhausted.

Medical Assistance (MA) Spenddown (SF 250/HF 225)

Passed in the 2017 session, this legislation changed Medical Assistance policy so that people with disabilities who depend on MA services can keep more of their own income and savings. A 1% increase in the spenddown was approved.

Advocacy Throughout the Year

Our toolkit includes detailed information on how to conduct a call with a legislator or their staff, write letters or emails to legislators, speak at town hall forums, and visit in person with your legislator.

Advocacy Toolkit