April 2018

achieving-collaborative-treatmentDisability Rights Training for Parents
Medicaid Early and Periodic Screening Diagnostic & Treatment Services (EPSDT)
Thursday, April 19
5:30 PM – 7:30 PM
Achieving Collaborative Treatment (ACT)
200 Enterprise Dr. Verona, WI 53593
RSVP: Space is limited RSVP to Kelly Deneen kelly.deneen@actreatment.com
Cost: This training is free to parents and care staff
Childcare: ACT will provide childcare options for attendees – Notify upon RSVP

If you are the parent/guardian of a child with a disability who is under the age of 21
and who has qualified for Wisconsin Medicaid ForwardHealth and you want to learn
about your child’s rights to EPSDT medically necessary preventive, dental, mental
health, developmental, and specialty health care services, then this training is for you.

ACT is offering an EPSDT training presented by Mitch Hagopian,
an attorney from Disability Rights Wisconsin with decades of experience.
➢ Learn what EPSDT federal law is.
➢ Learn about the health services covered under EPSDT law.
➢ Learn how to effectively advocate for EPSDT services for your child.
There will be a question and answer period immediately following the presentation.

Family-Voices-of-Wisconsin-LogoAdvocacy for Change: The Voices of Families
Thursday, April 12, 2018
8:30 AM – 4:30 PM
Madison Concourse Hotel
1 W. Dayton Street, Madison WI 53703


Advocacy for Change is a full day training event for parents and other family members to gain advocacy skills and strategies. Participants will learn about legislative issues that impact families who have children with disabilities and/or special health care needs.

Participants will:
– Learn about the latest policy priorities, including long-term supports, changes to Medicaid and private insurance, special education, mental health and more!
– Practice and receive coaching how to tell your family story in ways that can impact changes in programs and policies.
– Visit with your elected officials at the State Capitol to educate themabout issues important to you and your family.

Scholarships available for registration, travel and hotel expenses.

Learn more and apply at: familyvoicesofwisconsin.com/trainings/afc/ or contact Lynn at Lynn@fvofwi.org or 608.828.9959

ASW LogoACTION ALERT: Support Fiscal Year 2019 Autism Funding
The deadline to sign is COB on March 14, 2018

Representative Chris Smith (R-NJ) has created a “Dear Colleague” letter to the Chair and Ranking Member of the Appropriations Subcommittee urging them to provide full funding for programs authorized by the Autism CARES Act. As you know, the President’s Budget proposes to eliminate the HRSA workforce programs. Rep. Smith needs our help to get other members of Congress to sign on to this letter in support of Autism CARES Act funding. The deadline is tomorrow.

Please call your Representative TODAY (toll-free switchboard number 202-224-3121) and ask them to please sign on to Representative Smith’s letter to appropriators requesting full funding of the Autism CARES Act programs. They should contact Marisa Kovac in Rep. Smith’s office (marisa.kovacs@mail.house.gov; 202-225-3765) to sign on to the letter.

If you have your Representative’s or staff email address please email them the letter below and have them fill out this form.

Support FY 19 Autism Funding through LHHS
Sending Office: Honorable Christopher H. Smith
Sent By: Marisa.Kovacs@mail.house.gov

Dear Colleague:

On behalf of the more than one million American families affected by autism spectrum disorders (ASDs), we urge you to join us in requesting fully funding the Department of Health and Human Services’ autism activities as authorized by the Autism Collaboration, Accountability, Research, Education, and Support Act (or Autism CARES Act/PL 113-157), in the Fiscal Year 2019 Labor, Health, and Human Services, Education and Related Agencies Appropriations bill.

As you may know, ASDs are a complex range of disorders marked by deficits in social behavior and communication, and a restricted range of activities. Autism symptoms may vary by person from mild to severe. Some individuals with autism have strong intellectual and language abilities, while others are cognitively impaired and require life-long care.

The percentage of children diagnosed with autism has grown in recent years – about 1 in 68 children have been identified with ASD according to estimates from the Centers for Disease Control and Prevention (CDC), making funding imperative.

To add your signature to this letter, please fill out this form. The deadline to sign is COB on March 14, 2018.

March 8, 2018

Chairman Tom Cole Ranking Member Rosa DeLauro
House Committee on Appropriations House Committee on Appropriations
Subcommittee on Labor, HHS, Subcommittee on Labor, HHS,
Education and Related Agencies Education and Related Agencies
Washington DC, 20515 Washington DC, 20515

Dear Chairman Cole and Ranking Member DeLauro,

On behalf of the more than one million American families affected by autism spectrum disorder (ASD, hereafter referred to as autism), we thank the Subcommittee for its leadership in designating autism funding in previous appropriations bills and we urge you to fully fund the fiscal year (FY) 2019 funding levels for the Department of Health and Human Services’ autism activities as authorized by the Autism Collaboration, Accountability, Research, Education, and Support Act (or Autism CARES Act/PL 113-157), in your fiscal year (FY) 2019 Labor, Health and Human Services, Education and Related Agencies Appropriations bill.

According to the latest released data from the Centers for Disease Control and Prevention (CDC), estimates are that 1 in 68 children have been identified with autism. Autism occurs in all racial, ethnic and social groups. In many cases, it impairs a person’s ability to communicate and to relate to others, and remains a life-long challenge, not only for those who have been diagnosed, but for parents and other family members as well. The estimated total cost per year for children with autism in the United States is between $11.5 billion and $60.9 billion.

For FY 2019, we are specifically requesting at least the Autism CARES Act’s authorized level for the National Institutes of Health and the Interagency Coordinating Committee, $190 million; the authorization for CDC to conduct developmental disabilities surveillance and research activities; $22 million; and for the Health Resources and Services Administration (HRSA) to carry out autism education, early detection, and intervention programs, $48 million.

This is a particularly exciting time for autism research. A recent report in the journal Nature Neuroscience involved the analysis of over 5,200 whole genomes from families affected by autism. That study found 18 newly identified autism genes that affect the operation of a small subset of biological pathways in the brain. All of these pathways affect how brain cells develop and communicate with each other, providing a clear set of potential targets for future medicines. Given the important progress in the field, it is vital that we sustain and improve our investment in autism research.

The House and Senate passed the Autism CARES Act unanimously. Accordingly, we ask for your strong support for funding in the FY2019 Labor-HHS-Education bill especially to enable vigorous efforts to pursue much needed advances in autism research.

survival_coalition_logo_2Disability Advocacy Day 2018
Tuesday, March 20, 2018
9:30 AM – 3:30 PM
Monona Terrace Community and Convention Center
One John Nolen Drive,  Madison, WI

Make certain your voice is heard! Disability Advocacy Day is designed to connect you with your legislators so you can talk about issues that matter to you. You are the expert in sharing how legislative policies affect people with disabilities in their everyday lives.
Registration is now open.

Register Online or Print Registration Form

ASW Logoignite_logo



Autism Society Public Policy and Advocacy Newsletter – February 22, 2018


On February 12, President Trump transmitted his Budget proposal for Fiscal Year 2019 to Congress. The Autism Society provided a summary analyzing the impact on programs that support people with disabilities immediately following its release. The Budget makes significant cuts to numerous programs that support people with disabilities and other vulnerable people.

The President’s Budget is just the first step in year-long budget and appropriations process. In the week before the budget was released, congressional leaders came to an agreement on a top-line number for discretionary spending for Fiscal Year 2018 that began on October 1, 2017. This deal will allow the Congress to finalize the 12 annual appropriations bills, hopefully before the next continuing resolution (CR) expires on March 23. Congress will then have to start working on passing annual appropriations bills for the Fiscal Year 2019. The budget deal to lift the caps on discretionary spending will help smooth this process in an election year.

The Autism Society will be monitoring this process closely and advocating for the highest possible funding for programs important to the individuals and families we serve.


Last week, the House of Representatives passed the ADA Education and Reform Act of 2017 (H.R. 620) by a vote of 225-192. This bill prevents lawsuits over architectural barriers violating the Americans with Disabilities Act (ADA) unless an individual provides “specific enough” notice and allows 120 days for a business to correct that barrier. Please use this link to see how your Representative voted on the ADA Education and Reform Act of 2017 and thank members that voted against the bill. The Autism Society sent a letter to Congress in opposition to the bill, held a conference call with affiliate leaders, participated in a national call-in day, issued an action alert and issued a statement following passage. In addition, the CCD Rights Task Force created a webpage with resources for advocates that includes a CCD statement of Kim Musheno, current chair of CCD.

There is no Senate companion bill to date. Affiliates are encouraged to use the resources to continue to educate Senators about the how this measure would severely weaken rights to access for people with disabilities.Also see a joint statement by Senators Bob Casey (D-PA), Chuck Schumer (D-NY), Tammy Duckworth (D-IL), Maggie Hassan (D-NH), Elizabeth Warren (D-MA) and Chris Van Hollen (D-MD) considering this bill in the Senate.


The Senate Health, Education, and Labor (HELP) Committee is beginning to draft a bill to reauthorize the Higher Education Act (HEA). Committee Chairman Lamar Alexander (R-TN) and Ranking Member Patty Murray (D-WA) are seeking comments. If you have ideas for better including students with autism into higher education programs, please send comments to HigherEducation2018@help.senate.gov with a copy to kmusheno@autism-society.org.

In 2006, the Higher Education Act created the Transition Programs for Students with Intellectual Disabilities (TPSID). The Autism Society participates on a working committee developing recommendations to improve the TPSID programs and has assisted in developing a sign on letter, which you can sign onto using the Google form linked to the letter. You can also use it as a sample to develop your own comments.


The President’s Committee for People with Intellectual Disabilities (PCPID) has released its 2017 report, America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy. The report describes the current state of the DSP workforce as a “crisis,” noting that the average direct support professional wage is $10.72, most work two or three jobs, and the average annual DSP turnover rate is 45%. This report explores how these issues affect individuals, families, and human services systems; the factors that contribute to these issues; and promising practices to strengthen the direct support workforce.





Spring Election Fact Sheet
Date Posted: February 19, 2018







Resources for Access, Independence, Self-Advocacy and Employment
Date Posted: February 14, 2018

The Valentine’s Day edition of The RAISE Standard e-news, looks at the importance of soft skills, and how to teach them so young people are ready to go to work.

See the February Newsletter





Survival Coalition Special Education Quality Survey
Date Posted: January 30, 2018

The Survival Coalition of Wisconsin is conducting a survey about delivery of special education services across Wisconsin. Parents of children with disabilities have important information to share about the quality of their child’s education and preparation for college/career. Wisconsin public schools have not seen an increase in special education funding in more than a decade, yet costs to educate students continue to rise. Disability advocates are working on policy strategies that can better equip public schools to prepare children with disabilities for adult life. The Survival Coalition will be using this information to educate policy makers about the needs of children with disabilities in our public schools.

If you have one or more children with disabilities attending public school in Wisconsin, please participate in this short survey and share widely with other families and organizations. Please complete this survey by March 1, 2018.


Thank you,

Survival Co-Chairs
Maureen Ryan, moryan@charter.net; (608) 444-3842
Beth Swedeen, beth.swedeen@wisconsin.gov; (608) 266-1166
Kristin M. Kerschensteiner, kitk@drwi.org; (608) 267-0214
Lisa Pugh, pugh@thearc.org; (608) 422-4250

Fil Clissa
On Behalf of Survival Coalition
survivalcoalitionwi@gmail.com; 608-698-0333





IGNITE! Public Policy and Advocacy Newsletter – Jan 2018
Date Posted: January 25, 2018
Follow the link below to see the complete newsletter.
IGNITE! Public Policy and Advocacy Newsletter – Jan 2018


ACTION ALERT: We Must Continue the Fight to Protect Medicaid
Date Posted: January 24, 2018

The House and Senate Republicans and Democrats are meeting at the end of the month to determine their respective caucus’ legislative priorities for 2018. The disability community must remind Congress that we support the Medicaid program and that they should not take steps to cut or cap the program.

Key House and Senate leaders have indicated that they would like to cut spending on federal program such as Medicaid in response to the 1.5 trillion dollar loss of revenue due to the tax cuts. Some leaders have been careful to say that Medicare and Social Security are off the table for possible cuts but Medicaid, food assistance, Supplemental Security Income and others remain targets. This is a continuation of the fight in 2017 except they are using different messaging. Medicaid is at risk whether they are calling it “welfare reform” or “opportunities” or “jobs for people”, the end result is reducing enrollment in Medicaid and spending less on the program.

The only feasible way for Congress to enact major cuts or caps to Medicaid this year is through special budget rules (known as reconciliation) that allow the Senate to pass budget-related legislation with a simple majority. But reconciliation cannot proceed without first passing a budget resolution that includes instructions that would allow the Senate to use special budget rules. We must remind Congress that we want to protect Medicaid and other programs. Insist that Congress refuse to include reconciliation instructions in any budget legislation and instead seek bipartisan efforts to strengthen Medicaid and other social programs people with disabilities rely on.

Take Action 
Call your Representative and Senators today—202-224-3121. EVERY call matters. If we can prevent Congress from passing a budget, then Congress will not be able to cut or cap Medicaid. Act now as Congress will be deciding what direction to take at the end of the month.

What to Say:
– I am your constituent.
– I am a person with a disability (or a family member, or professional in the field).
– Medicaid provides critical services to people with disabilities.
– Protect Medicaid from cuts and caps.
– Do not pass a budget that allows Medicaid cuts.

Autism Society
4340 East West Hwy Ste 350
Bethesda, MD 20814



ACTION ALERT: Tell Congress to Keep Kids Covered
Date Posted: Thursday, January 11, 2018

Over 100 days have passed since Congress let funding for the Children’s Health Insurance Program (CHIP) expire, creating uncertainty for families across the country who depend on the program for health coverage. Lawmakers agreed to a short-term extension late last month as part of a plan to keep the government open, but that agreement is set to expire next week. The Congressional Budget Office (CBO) estimates a bipartisan, bicameral extension proposal currently under consideration, the KIDS Act (S.1827), will save the government $6 billion over a 10 year period. Unfortunately, partisan politics continues to wreak havoc on the process.

Meanwhile, many states are already issuing termination notices to program beneficiaries worried about the threat of losing access to care. Without a permanent agreement, states will exhaust CHIP funding resources leaving 9 million low and middle-income children nationwide, many of whom live with autism and other disabilities, uninsured.

Please contact your senators and representatives (202-224-3121) today and urge them to #ExtendCHIP. Each day CHIP reauthorization remains unresolved threatens essential health coverage for children nationwide.





Survival Coalition Testimony against AB693 – the “Teacher Protection Act”
Thursday, January 11, 2018

Chairperson Ott and Assembly Committee on Judiciary Members:

The Survival Coalition of Wisconsin Disability Organizations is comprised of over 30 statewide groups representing people with all disabilities and all ages, their family members, advocates and providers of disability services. Organizations in our coalition represent and work with students with disabilities and their families across the state and are concerned about the ramifications for students with disabilities if this legislation is enacted. We feel strongly passing this bill would be a step backwards in educating and protecting the rights of students with disabilities.
All teachers and students deserve a safe environment in which to teach and learn. Unfortunately, the measure does not address improving safety through providing needed supports, services, staffing levels, and professional development. Special education funding has remained flat for almost a decade creating more unmet needs for students with disabilities. Instead, the proposal would occasion the following harmful effects:
– Infringing on student privacy rights
– Encouraging ineffective, punitive responses to disability-related behavior
– Creating detrimental linkages between out-of-school incidents and school records
– Expanding the “school to prison pipeline”
– Undermining the administrative chain of command, potentially placing teachers,
administrators, and school boards at odds over established policy
– Compromising due process rights regarding suspension for students with disabilities
– Disproportionately affecting students with disabilities and mental health challenges
– Disproportionately affecting students of color
– Imposing unnecessary reporting categories for suspension and expulsion

We appreciate the opportunity to provide testimony and ask that you do not support AB693.

Thank you.

Sincerely, Survival Co-Chairs:
Maureen Ryan, moryan@charter.net; (608) 444-3842;
Beth Swedeen, beth.swedeen@wisconsin.gov; (608) 266-1166;
Kristin M. Kerschensteiner, kitk@drwi.org; (608) 267-0214
Lisa Pugh, pugh@thearc.org; (608) 422-4250


ACTION ALERT: Testify against AB693 – the “Teacher Protection Act”
Public Hearing in the Assembly Judiciary Committee at the State Capitol building in Madison
Thursday, January 11, 2018 at 9:00 AM

Has your child ever responded to anxiety or overwhelming stress at school with a meltdown that included hitting or kicking or pushing? Do you work with or care about students who struggle with such mental health-related behavior difficulties?
Under the so-called “Teacher Protection Act,” AB693, authored by Rep. Jeremy Thiesfeldt (R-Fond du Lac), any adult at school who saw such an incident could request that the principal report your child to law enforcement for assault – and the principal would have to do it, whether or not the behavior was disability-related.
Rather than improving safety by providing needed supports and services, the bill would impose consequences which already have serious negative impacts on students with mental health challenges and other disabilities: suspension and increased law enforcement involvement in school discipline.
Hearing notice is online at http://docs.legis.wisconsin.gov/raw/cid/1417290

ACTION STEP: Testify against the “Teacher Protection Act” (AB693)

In Person: Thursday, January 11, 9:00 AM in North Hearing Room (2nd Floor North) at the State Capitol building in Madison. Testimony will likely be limited to 2 minutes.
Via Email: Send testimony to Rep.OttJ@legis.wisconsin.gov as well as to your own legislators. Find your legislators’ contact information at http://legis.wisconsin.gov/

Your testimony could include points such as:
• How it could impact your child, or children you serve, if teachers were encouraged to report disability-related behavior to law enforcement and increase suspensions.
• To improve safety for students with mental health challenges and their teachers, we should provide supports and services and training to meet their needs. The new school mental health funding in the state budget was welcome but the need is far greater.
• Students with mental health challenges are already over-represented in the juvenile justice system, and AB693expands mandatory reporting to law enforcement without taking disability-related behavior into account. Wisconsin already has the 3rd-highest rate in the nation of school referral of students with disabilities to law enforcement; AB693 would result in even more criminalization of disability-related behaviors.
• Suspension does nothing to teach students to improve their social and emotional skills, yet children with emotional/ behavioral disabilities in Wisconsin are suspended at a rate 11 times that of their non-disabled peers. AB693 would encourage increased use of suspension.
• AB693 risks student privacy rights by expanding school access to juvenile arrest records, requiring law enforcement to inform schools about off-campus incidents involving students before the student has been found guilty or not guilty.

AB693 is online at https://docs.legis.wisconsin.gov/2017/related/proposals/ab693.pdf

Questions?  Contact Joanne Juhnke, Wisconsin Family Ties Policy Director, joanne@wifamilyties.org



Department of Health Services is Mailing IRS 1095-B Tax Forms for 2017

The Department of Health Services (DHS) is mailing IRS 1095-B tax forms to members who had minimum essential coverage from a State of Wisconsin health care program in 2017. Some examples of State of Wisconsin health care programs that provide minimum essential coverage include BadgerCare Plus and Medicaid for the Elderly, Blind or Disabled. Health care programs such as Family Planning Only Services or SeniorCare are not considered minimum essential coverage.

Members who are filing taxes should use the 1095-B tax form to answer health care coverage questions on their tax return. Most members who had minimum essential coverage will receive a 1095-B tax form by early February 2018. Only members who had minimum essential coverage from a State of Wisconsin health care program in 2017 will receive a form.

DHS is also required to send copies of members’ 1095-B tax forms directly to the IRS.

Members who have questions about the 1095-B tax form can call the Wisconsin 1095-B form assistance line at 1-866-667-9419. The Wisconsin 1095-B form assistance line does not provide tax advice. For tax advice, members should work with a tax professional.

The following are additional resources with 1095-B tax form and tax information:

Cover letter and 1095-B tax form sample
IRS 1095-B Tax Form Frequently Asked Questions web page from DHS
Information from healthcare.gov about exemptions from the minimum essential coverage requirement


Autistic Self Advocacy Network
ASAN Condemns Passage of Tax Bill

ASAN strongly condemns the final passage of the Tax Cuts and Jobs Act (TCJA), a tax giveaway for corporations and the wealthiest Americans which comes at great cost to the disability community. This law will take away health care from an estimated 13 million people. By drastically reducing tax revenue, it sets the stage for massive cuts to Medicaid, Social Security, and other essential services that allow people with disabilities to live good lives in our communities. The disability community cannot afford these cuts. For those who will lose access to lifesaving care and basic services, the price of this law is far too high.

Ignoring the clear will of the American people, the final version of TCJA repeals the individual mandate from the Affordable Care Act (ACA), which has helped to make insurance more affordable, especially for people with disabilities. The bipartisan Congressional Budget Office estimates that 13 million people will lose access to affordable coverage as a result. Nonetheless, despite the loss of the individual mandate, the Affordable Care Act itself remains the law of the land. ASAN will fight to mitigate the impact of this decision, and will continue to work to implement the Affordable Care Act and ensure that people with disabilities, our families, and all people have access to comprehensive and affordable health care.

Both the Administration and Congressional leadership have stated repeatedly in recent weeks that, to pay for these tax breaks, they will once again move to cut basic programs and services. The disability community is facing a full-scale attack. Medicaid, Medicare, and Social Security will all be on the chopping block – but this battle is far from over. We call on the disability community to mobilize for the fight for our lives.

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN was created to serve as a national grassroots disability rights organization for the autistic community run by and for autistic Americans, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to educate communities, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN’s members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.

Autistic Self Advocacy Network
ACI 2018 Applications Now Open

The Autistic Self Advocacy Network is now accepting applications for the 2018 Autism Campus Inclusion (ACI) Leadership Academy! The ACI summer leadership training prepares Autistic students to engage in disability advocacy on their college campuses. Accepted applicants will travel to Washington, DC and participate in advocacy training from June 16th to June 23rd, 2018. Participants will acquire valuable skills in community organizing, policy formation, and activism. Travel and lodging are fully covered by ASAN.

Applicants must identify as Autistic and be current college students with at least one year remaining before graduation. The Autistic Self Advocacy Network will cover travel and lodging costs for all ACI students. Students in TPSID programs (Transition and Postsecondary Programs for Students with Intellectual Disabilities), 2-year community colleges, 4-year colleges, and graduate school are eligible to apply. We especially encourage students of color, LGBT students, low-income students, students with intellectual disabilities, AAC users, and students from other or multiply marginalized communities to apply.

To apply, please submit a completed application by Sunday, February 25th, 2018 to Reid Caplan at rcaplan@autisticadvocacy.org.

If you need assistance or accommodations at any stage, or have any questions about ACI, please contact Reid Caplan at rcaplan@autisticadvocacy.org.

Wisconsin Department of Health Services
Cost-of-Living Adjustment Information for 2018

Monthly Social Security and Supplemental Security Income (SSI) benefits will have a cost-of-living increase of 2 percent in 2018.

The cost-of-living increase is set by the federal government and will result in changes to the income levels, allowances, and deductions for members enrolled in Medicaid for the Elderly, Blind, or Disabled. The changes will be processed in December 2017 and impact February 2018 benefits.

For more information, see the Social Security Administration’s 2018 Social Security Changes fact sheet and the Cost-of-Living Adjustment Information for 2018 webpage. Information about specific income levels, allowance, and deductions can be found in Operations Memo 17-56, titled “2018 Cost-of-Living Adjustment (COLA) for Medicaid for the Elderly, Blind, or Disabled.”