National Down Syndrome Congress Policy & Advocacy

National Down Syndrome Congress Policy & Advocacy The NDSC Policy & Advocacy Team is comprised of disability policy professionals who are experienced, well-connected, and highly regarded national subject matter policy experts and leaders.

Operating as usual

Congratulations to Think College on being awarded this important new federal grant that will promote inclusive higher ed...
10/10/2021

Congratulations to Think College on being awarded this important new federal grant that will promote inclusive higher education opportunities.

#ThinkCollegeThursday
Good news! Think College was awarded a federal grant to establish the Think College Network’s National Technical Assistance and Dissemination Center (TCN). In partnership with Association of University Centers on Disabilities, Florida Center for Students with Unique Abilities, Virginia Commonwealth University, Southeast Postsecondary Education Alliance, and MIPSA - Midwest Inclusive Post Secondary Alliance, we will expand our work in #InclusiveHigherEd. https://buff.ly/3ahcGgy

10/08/2021
justiceinaging.org

Check out Justice In Aging's new issue brief making the case that a small change to federal law to allow Home and Community Based Services (HCBS) to be covered retroactively would allow people needing immediate assistance to be able to choose between HCBS and nursing facility care, rather than being forced into a nursing facility because of lack of an alternative.

https://justiceinaging.org/wp-content/uploads/2021/09/Medicaids-Unfair-Choice.pdf

ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW
10/07/2021
ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW

ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW

Congress is actively negotiating the budget reconciliation package, and it is critical that advocates contact their Representatives and Senators now to urge them to strengthen and expand the Medicaid Home and Community Based Services (HCBS) infrastructure

The National Center on Educational Outcomes (NCEO) has a new website. NCEO focuses on the inclusion of students with dis...
10/07/2021
National Center on Educational Outcomes (NCEO)

The National Center on Educational Outcomes (NCEO) has a new website.
NCEO focuses on the inclusion of students with disabilities, English learners, and English learners with disabilities in instruction and assessments. NCEO is the lead organization involved in the TIES Center for Inclusive Practices and Policies for Students with Significant Cognitive DIsabilities. You can find the new website at https://nceo.info/ and can subscribe to the NCEO newsletter at the bottom of the webpage.

National Center on Educational Outcomes (NCEO)The National Center on Educational Outcomes (NCEO) focuses on the inclusion of students with disabilities, English learners, and English learners with disabilities in instruction and assessments. The scope of NCEO’s work includes issues related to acce...

On September 30, 2021, in response to requests by stakeholders like NDSC, the U.S. Office of Special Education and Rehab...
10/06/2021
Return to School Roadmap: Development and Implementation of Individualized Education Programs (Sept. 30, 2021) - Individuals with Disabilities Education Act

On September 30, 2021, in response to requests by stakeholders like NDSC, the U.S. Office of Special Education and Rehabilitative Services released new guidance on the development and implementation of IEPs during COVID. This guidance addresses questions on many topics including procedures for developing the IEP, the provision of a free appropriate public education (FAPE) in the least restrictive environment, providing a safe environment for students to return to school, and the need for compensatory services (including for students who may have reached the age terminating IDEA services in their state, but who missed critical services). You can find the guidance at https://sites.ed.gov/idea/idea-files/return-to-school-roadmap-development-and-implementation-of-ieps/?utm_content=&utm_medium=email&utm_name=&utm_source=govdelivery&utm_term=#citem_6523-2e66

AAAHome » Policy Documents » Return to School Roadmap: Development and Implementation of Individualized Education Programs (Sept. 30, 2021)Topic Areas: COVID-19, Individualized Education Programs, Least Restrictive EnvironmentReturn to School Roadmap: Development and Implementation of IEPs (Sept. ...

Attention High School and College Students: Register now for the Student Leadership Conference and Inclusive College Fai...
10/05/2021
Student Leadership Conference

Attention High School and College Students: Register now for the Student Leadership Conference and Inclusive College Fair
FREE Virtual Event
Nov 8-9, 2021

You are iinvited to attend the fifth annual #SLC, where current and future college students with intellectual disability gather to learn useful tools to support the transition into college life, expand your potential to serve as student advocates and leaders, and connect with peers from across the country. There will also be time for fun with yoga, an art class, karaoke, and a Nationwide scavenger hunt!

https://syr.us14.list-manage.com/track/click?u=87fe5ebb78cea9e2be361530c&id=9f7815fc10&e=3dcd11fb78

Welcome to the 5th annual Student Leadership Conference! Nov 8-9, 2021 *Virtual* At this year's Student Leadership Conference, we have many great presentations and fun activities planned, from...

Thanks for tuning in for our NDAC Quarterly Update Call!
09/30/2021

Thanks for tuning in for our NDAC Quarterly Update Call!

Momming & advocating overlap this morning—entertaining little man while I tune in to @ndscongress Advocacy Coalition quarterly update!



#StrongOverWrong #DownSyndrome #DownSyndromeAdvocacy #DisabilityAdvocacy #NDSC #AdvocacyCoalition #AdvocacyMatters #MrsKansas #MrsKansasInternational #MrsPageantry

You will hear from five dynamic speakers who will cover a parent brief on developing inclusive IEPS as well as a compreh...
09/28/2021

You will hear from five dynamic speakers who will cover a parent brief on developing inclusive IEPS as well as a comprehensive resource for families and educators on planning for inclusive education programs that focus on General Education Membership, Active Participation, and Learning.

Presenters include:
RIcki Sabia, JD, NDSC Senior Education Policy Advisor, TIES Parent Liaison
Terri Vandercook, Ph.D., TIES Research Associate
Gail Ghere, Ph.D., TIES Research Associate
Jessica Bowman, Ph.D., TIES Research Associate
Jennifer Sommerness, Ed.S, TIES Research Associate

Save your seat at this webinar by registering at https://attendee.gotowebinar.com/register/8500228055080970764

You will hear from five dynamic speakers who will cover a parent brief on developing inclusive IEPS as well as a comprehensive resource for families and educators on planning for inclusive education programs that focus on General Education Membership, Active Participation, and Learning.

Presenters include:
RIcki Sabia, JD, NDSC Senior Education Policy Advisor, TIES Parent Liaison
Terri Vandercook, Ph.D., TIES Research Associate
Gail Ghere, Ph.D., TIES Research Associate
Jessica Bowman, Ph.D., TIES Research Associate
Jennifer Sommerness, Ed.S, TIES Research Associate

Save your seat at this webinar by registering at https://attendee.gotowebinar.com/register/8500228055080970764

We have 499 NDAC members nationwide! Who will be our 500th member? We are accepting applications from all states but are...
09/21/2021

We have 499 NDAC members nationwide! Who will be our 500th member? We are accepting applications from all states but are particularly looking for members from Alaska and Wyoming!

Join the NDSC Policy Team as we advocate for legislation that supports our individuals with Down syndrome. Receive actions alerts and gain access to our quarterly policy calls (one is next week!). Submit your quick and easily online application at: https://www.ndsccenter.org/political-advocacy/national-down-syndrome-advocacy-coalition/ndac-membership-application/ It is free to join, and easy to make a difference.

We have 499 NDAC members nationwide! Who will be our 500th member? We are accepting applications from all states but are particularly looking for members from Alaska and Wyoming!

Join the NDSC Policy Team as we advocate for legislation that supports our individuals with Down syndrome. Receive actions alerts and gain access to our quarterly policy calls (one is next week!). Submit your quick and easily online application at: https://www.ndsccenter.org/political-advocacy/national-down-syndrome-advocacy-coalition/ndac-membership-application/ It is free to join, and easy to make a difference.

School districts across the country are grappling with mask mandate questions, and the disproportionate negative impact ...
09/21/2021
While Union County backtracks on relaxing of some COVID-19 restrictions, some parents are left wanting more

School districts across the country are grappling with mask mandate questions, and the disproportionate negative impact of COVID on children with Down syndrome is troubling. NDSC Senior Policy Advisor Stephanie Smith Lee was recently interviewed on the local channel FOX 46 Charlotte about the need for masks in Union County North Carolina Public Schools (which has a high rate of COVID) and the impact of COVID on children with Down syndrome.

https://www.fox46.com/coronavirus-return-to-learning/while-union-county-backtracks-on-relaxing-of-some-covid-19-restrictions-some-parents-are-left-wanting-more/

Even with some backtracking and changes from last week’s emergency meeting, some parents expected more.

Did you miss our September Policy and Advocacy Newsline released this week? Catch up on the latest news from the NDSC Po...
09/17/2021
Policy & Advocacy Newsline ~ September 2021 | National Down Syndrome Congress

Did you miss our September Policy and Advocacy Newsline released this week? Catch up on the latest news from the NDSC Policy Team here: https://www.ndsccenter.org/ndsc-newsline-september-2021/

The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

It’s not too late to contact your Members of Congress to ask them to pass the Better Care Better Jobs Act and make a $40...
09/14/2021
ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW

It’s not too late to contact your Members of Congress to ask them to pass the Better Care Better Jobs Act and make a $400 billion investment in HCBS. Call or email them now to help increase the independence and quality of life for people with disabilities and provide support to their paid and unpaid caregivers. https://ndsccenter.salsalabs.org/tellcongresstofundmedicaidhomeandcommunitybasedservices/index.html #CARECANTWAIT

Congress is actively negotiating the budget reconciliation package, and it is critical that advocates contact their Representatives and Senators now to urge them to strengthen and expand the Medicaid Home and Community Based Services (HCBS) infrastructure

How will passing the Better Care Better Jobs Act with a $400 billion investment in Medicaid HCBS affect your state? See ...
09/14/2021
ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW

How will passing the Better Care Better Jobs Act with a $400 billion investment in Medicaid HCBS affect your state? See the positive impact here:
https://www.aging.senate.gov/press-releases/better-care-better-jobs-act-state-by-state-fact-sheets?eType=EmailBlastContent&eId=3c40108c-643a-4e00-b794-09817b6840ea&eType=EmailBlastContent&eId=c999a8c0-f2b9-43cb-abc9-714f00f5e2ae.
Please contact your Members of Congress TODAY! https://ndsccenter.salsalabs.org/tellcongresstofundmedicaidhomeandcommunitybasedservices/index.html #CARECANTWAIT

Congress is actively negotiating the budget reconciliation package, and it is critical that advocates contact their Representatives and Senators now to urge them to strengthen and expand the Medicaid Home and Community Based Services (HCBS) infrastructure

ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW
09/13/2021
ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW

ACTION NEEDED: TELL CONGRESS TO FUND MEDICAID HOME AND COMMUNITY BASED SERVICES NOW

Congress is actively negotiating the budget reconciliation package, and it is critical that advocates contact their Representatives and Senators now to urge them to strengthen and expand the Medicaid Home and Community Based Services (HCBS) infrastructure

09/11/2021
nceo.umn.edu

As states, districts, and schools plan to return for the 2021-22 school year, questions are raised about whether and how to test children with disabilities, including children with the most significant cognitive disabilities and English learners with disabilities. This National Center for Educational Outcomes (NCEO) Frequently Asked Questions document addresses some common questions and provides links to useful resources https://nceo.umn.edu/docs/OnlinePubs/NCEOBrief26.pdf.

The COVID-19 pandemic has exacerbated direct workforce labor shortages and has caused many Medicaid Home and Community S...
09/10/2021
State Medicaid Home & Community-Based Services (HCBS) Programs Respond to COVID-19: Early Findings from a 50-State Survey

The COVID-19 pandemic has exacerbated direct workforce labor shortages and has caused many Medicaid Home and Community Services (HCBS) providers to close across the country, particularly impacting adult day programs, in-home care providers, supported employment and group homes. A recent report from the Kaiser Family Foundation details this impact and makes the case for a funding infusion by Congress through the current budget reconciliation process.

https://www.kff.org/coronavirus-covid-19/issue-brief/state-medicaid-home-community-based-services-hcbs-programs-respond-to-covid-19-early-findings-from-a-50-state-survey/

This issue brief presents early findings from the most recent KFF survey of Medicaid HCBS programs in all 50 states and the District of Columbia. It focuses on state policies adopted in response to…

There are many disability-related bills in Congress right now. Here is a good explanation of five of them. NDSC supports...
09/03/2021
5 Disability Bills In Congress To Watch

There are many disability-related bills in Congress right now. Here is a good explanation of five of them. NDSC supports all of the bills listed, but our top priorities from this list are the Better Care Better Jobs Act, the Transformation to Competitive Integrated Employment Act and the SSI Restoration Act. Please reach out to your Members of Congress and advocate for these important changes.

https://www.forbes.com/sites/andrewpulrang/2021/08/24/5-disability-bills-in-congress-to-watch/?sh=466798522830&fbclid=IwAR0__1WsB5k5WHPnEdHyz7CJayLEan8Un201mYA-ZjhqVAHDmkwbGdrj8Qw

Whether or not you agree with everything in these bills, every member of Congress should hear about them from their disabled constituents, and from their families, friends, and allies.

09/02/2021
The Arc's Center for Future Planning

Interesting story from Florida about a man with IDD who successfully fought his guardianship arrangement and won his independence. For information about autonomy, decision making supports and guardianship, check out The Arc’s Center for Future Planning - https://futureplanning.thearc.org

https://cbs12.com/news/local/i-team-getting-out-of-guardianship-one-former-wards-story?fbclid=IwAR2ELyiOD_ax5zSudEeflJsHvwSDx6sj0wUd11oh25gc9WwY1s2VCCwkQNU

For more than 65 years, The Arc has been supporting individuals with intellectual and/or developmental disabilities (I/DD) and their families. Learn more about The Arc and about how the Center for Future Planning® is supporting and encouraging families to plan for the future.

Since supportive decision making was introduced a few years ago, many families are choosing this less restrictive option...
09/01/2021
Guardianship requests decline as knowledge of alternative legal option grows

Since supportive decision making was introduced a few years ago, many families are choosing this less restrictive option over guardianship of their loved one with disabilities. There is much more education that needs to be done about these options.

https://www.wsaw.com/2021/08/10/guardianship-requests-decline-knowledge-alternative-legal-option-grows/?fbclid=IwAR1uADTk95WDNkjkV1EY3oq2QrhWYrT6T1qYu1oHyt33tO79y_2nd85eIrM

A little-known Wisconsin law is helping give people with disabilities and aging individuals the opportunity to maintain their rights while also receiving support from people they trust.

Important blog by Robert Stack, President and CEO of Community Options, Inc. on the recent appeals court ruling allowing...
08/31/2021
Other Voices: Torturing children legally at taxpayers’ expense

Important blog by Robert Stack, President and CEO of Community Options, Inc. on the recent appeals court ruling allowing the Judge Rotenberg Center in Massachusetts to circumvent the Food & Drug Administration’s ban and resume use of electric shocks as a behavior intervention for students with disabilities living there. NDSC unequivocally opposes the use of shocks as an aversive behavior conditioning technique.

https://www.post-gazette.com/opinion/Op-Ed/2021/08/15/Other-Voices-Torturing-children-legally-at-taxpayers-expense/stories/202108150017

A cattle prod is a handheld device used to make cows move in the direction you want by applying relatively high voltage, low current electric shock. It...

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NDSC Policy and Advocacy

The NDSC Policy & Advocacy Team is comprised of disability policy professionals who are experienced, well-connected, and highly regarded national subject matter policy experts and leaders. The Policy Team regularly consults with the engaged, experienced, and bipartisan NDSC Public Policy Advisory Council that represents a diversity of viewpoints and experiences. Recently, NDSC coalesced its large network of volunteer advocates across the country into the National Down Syndrome Advocacy Coalition (NDAC), a grassroots advocacy service that is designed to educate individuals with Down syndrome, their family members and other allies about policy issues and give them the advocacy tools, techniques and information they need to effectively engage with their legislators to advocate for change. All NDSC members and NDSC Affiliate Program subscribers are welcome to join NDAC, regardless of advocacy experience.

NDSC recognizes the value of joining our advocacy efforts with other disability and human rights groups in both informal and formal partnerships. Currently NDSC participates in the following coalitions: Consortium for Citizens with Disabilities, Collaboration to Promote Self-Determination, National UDL Task Force, UDL Policy Council, ABLE National Resource Center and the Leadership Conference on Civil and Human Rights.

You can learn more about our Policy & Advocacy Team, and other NDSC staff members here

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Who can share a copy of their state’s legislative advocacy toolkit? Looking for something we can use as a starting point for Down Syndrome Alabama. Thank you
Amazing story!
Netelix Down syndrome season
Were FSA dependent care accounts part of our ask with the latest stimulus package (ability to change, rollover, or reimburse)? I know there was guidance for this recently released but it doesn't sound like plan sponsors are required to adopt any of the amendments.
Hello fellow parents, caregivers and educators! In case you haven't heard about these awesome free resources from Julie Causton I want to share them with you. Everyone can be included with the correct supports. Enjoy! What is inclusion? What does inclusion look like? Most importantly, what’s possible when we think differently about human difference? Check out Dr. Julie Causton’s FREE resources for parents and educators supporting students with Down Syndrome:
Please review the piece I wrote below regarding the SCOTUS nominee and the ADA. I understand that it's a sensitive issue to some, but I ask that you read it with an open mind and understanding that I wrote it because I love my son and worry about disability rights. As a long time litigator, I have read thousands of federal court decisions, including hundreds of Supreme Court decisions, so I feel that I have a very good basis to express concerns about the nominee. A Supreme Court Scalia Protégé would not be a friend to the ADA or our son with Down syndrome As we wind down our national focus on Down Syndrome Awareness Month, I can’t help but feel angst. As a mother of a wonderful 12-year old boy with Down syndrome, I typically celebrate this time of the year by wearing crazy socks (a Down syndrome community favorite), or handing out “I someone with Down syndrome” bracelets. One of my favorite awareness activities is visiting with our son’s classmates to talk about Down syndrome. This year, though, I’m compelled to honor our son in another way – by discussing the composition of the Supreme Court and the likely addition of Judge Amy Coney Barrett. I am one of many thousands of warrior parents who fight every day for their special children. I have also been a litigator for more than 20 years, which makes me keenly aware why Judge Barrett’s judicial philosophy of “originalism” and “strict construction” would be no friend to our son. When our son was born, we were shocked to find out he had Down syndrome. I was 37 at the time, and while my age put our baby at higher risk for chromosomal abnormalities, we declined the genetic testing because we knew we would never terminate the pregnancy. Our son was welcomed into the world much-loved. We adore him. He makes for a great mayor, greeting everyone with a handshake or hug wherever we go, sharing the joy that radiates from his pores. But there have been, and there will continue to be, struggles along the way. The journey can be overwhelming. Parents of children with special needs cannot help but sometimes wonder, “why me? why him?” People have told me that God gave me my son for a reason - so I could use my skills and passion as a litigator to advocate not only for him, but help effect positive change for others with disabilities. Whether by God’s direction or otherwise, I have now become a vocal proponent of the rights of the disabled, particularly in my local community. With the imminent addition of Judge Barrett to the Supreme Court, I am very worried about the future of disability rights. In part, because of the Supreme Court decision in Olmstead v. L.C., 527 U.S. 581 (1999). Olmstead involved two disabled women from Georgia who were institutionalized in a psychiatric unit. At some point, their treatment teams had determined that a community-based setting was more appropriate. Georgia failed to do so, and the women sued under the Americans with Disabilities Act (ADA), which prohibited discrimination on the basis of disability in State and local government, and public accommodations, among other areas. In passing the ADA, Congress made several findings, including that individuals with disabilities have historically suffered from isolation and segregation, which continue to be a pervasive problem, and that discrimination against individuals with disabilities persists in critical areas such as institutionalization. 42 U.S.C. § 12101(a)(2), (3). Olmstead is back on our minds as we watch the process to fill the seat of the late Justice Ginsburg – a giant in the disability rights community. Over twenty years ago, she authored this landmark decision and found that the ADA protects individuals with disabilities from institutional confinement, if they are deemed capable of a less restrictive environment. Ginsburg’s eloquent opinion reflected “two evident judgments.” First, that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” And second, that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment.” There were three dissenters in Olmstead – Justices Thomas, Rehnquist and Scalia – who rejected what they viewed as an overly broad definition of “discrimination”: “the majority derives a more ‘capacious’ definition of ‘discrimination,’ … one that includes ‘institutional isolation of persons with disabilities.’” The dissent wrote at length in an attempt to justify a more “traditional” definition of the word “discrimination.” Justice Scalia and the other dissenters were adherents to a “strict construction” judicial philosophy, i.e., narrowly interpreting statutory language. Judge Barrett has made clear that her judicial philosophy mirrors Justice Scalia’s. Olmstead exemplifies the dangers of this judicial philosophy to disability rights. Judge Barrett has said that it is the legislature’s job to create policy, and the judiciary’s job to apply it. But, in passing the ADA, Congress created a policy and found that “segregation” and “institutionalization” were forms of discrimination it wanted to address. In reviewing the ADA, Justice Ginsberg adopted a fair meaning of the statute consistent with Congress’ stated policy. However, the dissenters’ overly narrow definition of “discrimination” actually undermined Congress’ authority to make policy. Too often, “strict construction” and “originalism” can be used to justify depriving the rights of the very people needing protection. Judge Barrett and I have something in common. She too has a child with Down syndrome. However given her judicial philosophy, and as a law clerk to Scalia the year that Olmstead was issued, it is likely that she would have been an Olmstead dissenter. The next time an issue of ADA interpretation is presented to the Supreme Court, will the Court overturn Olmstead with Barrett and the other strict constructionists in the majority? Will the strict constructionists interpret the language of the ADA so narrowly again (but this time as a majority) to undermine the policy of Congress and rule against the persons in need of ADA protection? Will that same narrow judicial philosophy be applied to other statutes designed to protect people with disabilities — the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and others. Will that person in need of protection be our son? Will it be your child? Will be it be you? This warrior mom fears that future is imminent. Judge Barrett seems like a fine person, and an intelligent person. However, her addition to the Supreme Court is worrying for many disability advocates and parents. To date, at least 50 disability rights groups have publicly opposed her nomination. Upon Ginsberg’s passing, The Arc (a national disability advocacy group) called her a champion for millions of people with disabilities. We may never have another giant like Ginsberg, but we carry her notorious spirit with us as we continue our fight for a just and inclusive society for all people with disabilities.
Register by Clicking here https://forms.gle/Zchpfj2yCLhZ5jm8A
Can you please state your position on the nomination of Amy Coney Barrett? I am attaching a letter by 50 disability groups sent to Senate members opposing her confirmation and noticed that this organization was not one of the signatories. In your advocacy for the DS community, can you ensure that the Senate judiciary group members ask pointed questions about her decisions in the area of disability rights? Also, she should be pressed on her views of Scalia's dissent in Olmstead, since she has indicated that she shares the same judicial philosophy as the late Justice.
Thanks for the Advocacy Boot Camp
Thanks again for the webinar today. It was a WEALTH of info
I don't want to rain on Zack Gottsagen's parade (and so posting here) -- but am I the only one who saw Shia Leboeuf roll his eyes in exasperation when Zack hesitated in reading the cue card? Hope I am wrong....
I am a job coach at westlake ent. working with developmental problem people....they are so proud to be working and earning a paycheck.....so glad we can work this way with them they are very happy to be out in the work world..........my name is holly nawrocki 17 years a job coach