As the semester wraps up, many families are receiving progress reports. These reports should clearly show whether your child is making progress toward their IEP goals—but that isn’t always the case.
We created a simple IEP Progress Report Checklist to help families:
✔ Compare progress reports to IEP goals
✔ Look for measurable progress (not vague language)
✔ Check that goals include a baseline and clear data
✔ Know when it’s time to ask questions or request a meeting
Advocating doesn’t mean being confrontational. It means being informed and partnering with your school to ensure your child is receiving a Free Appropriate Public Education (FAPE).
If something doesn’t seem right, you don’t have to figure it out alone.  
​📩 Contact Down Syndrome Advocates in Action NE at [email protected] — we’re here to help.
#dsaane #inclusion #advocoate #Downsyndrome

We’re excited to announce that registration is now open for the 2026 DSAA Nebraska Buddy Walk, happening Saturday, March 14, 2026, at Gateway Mall in Lincoln, Nebraska! Families, friends, and community members are invited to join us as we Rock Your Socks in celebration of individuals with Down syndrome.

This year, we’re using a new walk registration platform, and there are a couple of important changes to be aware of:

• Team creation works a little differently — only the team captain can register when creating a team. Additional family members can register separately afterward.
• We’re also using Zeffy for registrations and donations. Zeffy passes 100% of your registration and donation directly to DSAA Nebraska. During checkout, Zeffy includes an optional platform contribution that defaults to 17%, but families can adjust this to any amount (including $0) by selecting “Other” in the dropdown.

The Buddy Walk is a fun, inclusive, open-house-style event, so families can participate at their own pace while supporting advocacy, education, and resources for the Down syndrome community across Nebraska.
We can’t wait to celebrate with you--register today and start building your team!

You can now visit our Buddy Walk website to register, create your team, and start fundraising:
 https://www.dsaane.org/buddy-walk.html
​
Kearney Friends, we will have more information about your Buddy Walk closer to World Down Syndrome Day.

If you or a family member uses the Aged & Disabled Waiver, or may need it in the future, you need to be aware of the proposed changes underway.  
The Public Comment Period  ends ​Monday January 5th.    

Key Concerns for Families:

1. Reduced Caregiver Hours: The biggest worry is the potential cut from 112 hours of paid care to just 40 hours, making 24/7 care virtually impossible for families without significant outside help, which many don't have. 
2. Risk of Institutionalization: Cuts could force families to choose between expensive institutional care (nursing homes) or losing their ability to care for loved ones at home, leading to poorer health outcomes (bedsores, hospitalizations) compared to consistent home care, say families and advocates.
3. Undermining Successful Care: Many families have successfully kept complex-needs individuals out of facilities for years, but the proposed changes penalize this effort by setting arbitrary financial caps based on nursing home costs, notes 3NewsNow, Nebraska Examiner, and KOLN | Nebraska Local News, Weather, Sports | Lincoln, NE.
4. Financial Strain & Career Impact: Families rely on waiver funds to cover significant costs, and losing hours means lost income, forcing parents to work fewer hours or find other jobs, potentially missing critical care needs or facing debt, notes 3NewsNow, News From The States, and The Arc of Nebraska.
5. Lack of Input & Transparency: Families feel the changes were announced with a short comment period (Dec 5-Jan 5), limiting their ability to provide crucial input, say Nebraska Examiner and Facebook users.
6. Impact on Quality of Life: The changes threaten to reduce the quality 

Steps that you can take:
We reached out to Nebraska Senator Danielle Conrad who encourages everyone to continue raising public awareness by:

• Opposing these changes in the official public comment process at DHHS. Keep your comment brief and personal. For example: “I oppose the proposed reduction in waiver hours due to serious safety concerns for my loved one.”  Also include one direct question, such as: “Please explain how these proposed changes comply with Nebraska’s Olmstead Plan and the requirement to serve individuals in the most integrated setting.”
• Contacting Governor Pillen today at governor.nebraska.gov/contact-form or call 402-471-2244
• Sharing your story with the media through calls, press releases, op-eds, or letters to the editor-submission forms here and here ;
• Reaching out to additional state senators to keep this issue front and center;
• Asking Senator Brian Hardin, Chair of the Health and Human Services Committee, to consider holding hearings;
• Asking DHHS Director Corsi to convene a town hall with policymakers and families;
• Engaging online to help amplify this cause and build community support.

These and other ideas will help us work together to ensure vulnerable Nebraskans and their families don’t lose access to the care they need and deserve.  This goes far beyond the Down syndrome community as this is an AGED and Disabled waiver and everyone knows someone who is over the age 65.  

Advocacy Alert
📢 What Parents of Children with Down Syndrome Need to Know About the New Executive Order on School Discipline  Issued April 23, 2025


🧾 What Changed?
A new federal executive order removes support for school discipline policies that consider equity or racial disparities, and encourages schools to focus on behavior alone, regardless of background or disability.
While this does not change special education laws, it may make it harder for students with Down syndrome to receive fair, individualized discipline and appropriate supports in school.


👦 How This May Affect Your Child
❗ 1. Less Consideration for Disability-Related Behavior
Children with Down syndrome may struggle with things like impulse control, sensory issues, and emotional regulation. Schools may now respond with punishment instead of support.
❗ 2. More Suspensions & Exclusions
This change may lead to more students being suspended or removed from classrooms — even when their behavior is related to their disability.
❗ 3. Risk to IEP and 504 Protections
Though the law still requires schools to support students with disabilities, some schools may stop following positive behavior supports written into a student’s IEP or 504 Plan.


✅ How Parents Can Protect Their Child
✔️ Know Your Rights

• Your child is protected under IDEA, Section 504, and the ADA.
• Schools must consider whether behavior is related to a disability before applying major discipline.

✔️ Review & Strengthen Your IEP or 504 Plan

• Request a Functional Behavioral Assessment (FBA).
• Ensure your child’s plan includes a Behavior Intervention Plan (BIP).
• Ask for a team meeting to update strategies and supports.

✔️ Advocate & Document Everything

• If your child is disciplined, ask for a Manifestation Determination Review.
• Keep copies of communications and detailed notes from meetings or incidents.

✔️ Reach Out for Support

• Contact Down Syndrome Advocates in Action Nebraska for help navigating school challenges.
• Join a parent support group or network with other families.

📣 Final Thoughts
This order may cause schools to use stricter discipline policies that ignore the needs of students with Down syndrome.
Your advocacy is key to protecting your child’s rights. We're here to support you every step of the way.


🧩 Need Help or Have Questions?
Down Syndrome Advocates in Action Nebraska (DSAA NE)
🌐 www.dsaane.org
📞 (402) 413-0199
📧 [email protected]
 
Down Syndrome Advocates in Action Nebraska
Empowering Families. Supporting Inclusion. Advocating for Change.

Fact #8: As we continue our exploration of autism and Down Syndrome dual diagnosis, uncover today’s often surprising fact that students can be given an educational verification of autism and get supports at school without a medical diagnosis of autism. Conversely, a student may get a medical diagnosis of autism and not qualify for an IEP or certain services. This last one is very rare in the ds community as most of our population already qualify for an iep, however the medical diagnosis can help change the supports offered to make sure the unique needs of the student are being met. #dsaane   #autismacceptance #inclusionmatters #downsyndrome #autism

🌟 Embracing Autism Awareness Month with a Focus on Down Syndrome! 🌟 Join us this April as we embark on a journey of awareness and education. We'll be sharing daily insights into the co-occurring diagnosis of Down syndrome and ASD, aiming to foster a more inclusive and supportive environment for individuals with these unique needs. #AutismAwarenessMonth #DownSyndromeAwareness #InclusionMatters #dsaane