WASHINGTON — The night before President Donald Trump took office, Sara Hart Weir sat down with his controversial pick to run the U.S. Department of Education.

Her meeting with Betsy DeVos demonstrated the clout Weir wielded in Washington as president and CEO of the National Down Syndrome Society (NDSS), which advocates for the rights of people born with the chromosomal disorder that causes a range of intellectual and developmental disabilities.

Weir’s embrace of DeVos also set off months of conflict within the NDSS and the wider disability community, which regards the Trump administration as hostile to many of its priorities. It has left some advocates wary of her candidacy for Kansas’ 3rd District Congressional seat, currently held by Democratic Rep. Sharice Davids.

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Weir has launched her GOP primary campaign almost exclusively on her record with the NDSS. Her website, which contains no information about her policy positions, features a biography and video that tout her background as a disability advocate.

But Weir faces sharp criticism from former employees and parents who allege that she used heavy-handed tactics to silence dissenting voices and valued access to Republican leaders over the interests of people with disabilities and their families.

“It scares me to see her running for Congress because I don’t think she’s going to represent my kid at all,” said Hallie Levine, a Connecticut-based freelance journalist whose daughter has Down syndrome and who was involved with the NDSS for several years as a parental ambassador.

Weir, a 37-year-old Mission, Kan. resident, acknowledged that the 2016 election spurred emotional disagreements. But she said the NDSS approached Trump just as it did President Barack Obama.

“As you know the election of President Trump led to turmoil in the disability community, where a few organizations … chose to shun the administration,” Weir said. “And others took the approach that we did at the National Down Syndrome Society and that was to carry out our mission by engaging the current administration just like we had with other administrations.”

Weir repeatedly told The Star when asked about these decisions: “If you’re not at the table, you’re on the menu.”

David Perry, a Minnesota historian whose son has Down syndrome and autism, said prior to 2017 he considered Weir someone he could rely on. But after the DeVos meeting, as he became more outspoken in his criticism of her organization, he said Weir stopped returning his queries.

“It became hard to see her as an ally and easy to see her as someone who was using Down syndrome as a pathway to her own political success,” said Perry, who writes about disability issues for a variety of publications.

‘A lot of us were very, very upset’

Weir worked at the NDSS in high-level posts for seven years, spanning both the Obama and Trump presidencies. She played a major role in the 2014 passage of the ABLE Act, which created tax-exempt savings accounts for people with disabilities that do not jeopardize their Medicaid benefits.

More than 45,000 ABLE accounts have been opened, according to Weir’s campaign.

Patti Saylor, a Maryland woman who won a $1.9 million settlement last year after her son with Down syndrome was killed by off-duty sheriff’s deputies in 2013, credited Weir with helping bring attention to the case.

“I don’t think we would have made the strides we did if we didn’t have Sara and NDSS’ support,” Saylor said.

Neil Romano, the chair of the National Council on Disability, which advises Congress and the president on disability issues, praised Weir’s goal-oriented approach and said that the NDSS’ disagreements with other organizations were over tactics rather than policy.

“I always find that when I’m in a room with Sara that I’m practically dead silent, because she has so much to say… So many ideas. She has a very, very aggressive mind designed to get something done,” said Romano, who was named to the council in 2015 and elevated to chair by Trump in 2018.

But with DeVos’ confirmation, Weir became a more divisive figure.

Days before the pre-inaugural meeting with Weir, DeVos was grilled at her confirmation hearing about her understanding of the Individuals with Disabilities Education Act (IDEA), the federal law governing services public schools are required to provide students with disabilities.

DeVos, the daughter-in-law of billionaire Republican donor Richard DeVos and a longtime champion of private school vouchers, failed to answer clearly whether she thought such schools should be required to follow IDEA requirements.

Some NDSS parents were shocked when the organization posted Facebook photos of Weir with DeVos, along with a now-deleted message that applauded her commitment to families of those with special needs.

“In today’s meeting, DeVos shared her support for IDEA and expressed her strong support and record fighting for special needs families,” the post said.

Both the initial post and a clarification — saying that the NDSS used the meeting as an opportunity to educate DeVos on the importance of IDEA — generated hundreds of angry replies.

“A lot of us were very, very upset,” said Levine, who participated in a conference call set up to mitigate the backlash.

Levine regularly participated in the NDSS’ annual Buddy Walk in Washington and once ran a marathon to raise money for the organization. Now she’s completely cut her ties, she said.

Other parents didn’t see an issue with the meeting.

“To me, it was right in line with what NDSS has always done,” said Mary Ann Pyron, a parental ambassador in Texas whose adult son has Down syndrome. “They didn’t care which side, whether you were a Republican or a Democrat… So I wasn’t surprised to see that picture.”

Pyron acknowledged other parents were upset and some withdrew from the parental ambassador program in the months that followed. “Keep in mind we are all a group of passionate moms and everyone expresses their passion in different ways,” she said.

DeVos needed a tie-breaking vote from Vice President Mike Pence to win confirmation after two Senate Republicans joined Democrats in opposition.

Weir’s critics say her outreach to DeVos helped give GOP lawmakers political cover to vote for her. She said the engagement “was all about putting people with Down syndrome at the table.”

DeVos has remained a figure of scorn in the disability community since the Department of Education budget she submitted this year proposed funding cuts for the Special Olympics and programs for students who are deaf and blind. Some advocates hold Weir and the NDSS responsible for enabling DeVos.

“The organization shifted significantly to being a mouthpiece for the administration,” said Rebecca Cokley, the director of the Disability Justice Initiative at the liberal-leaning Center for American Progress who had worked in various roles related to disability policy under Obama.

Questions about partisanship

A major source of tension on Weir’s watch was the Trump administration’s push to repeal the Affordable Care Act.

Many disability groups were outspoken in their opposition, particularly to proposals to enact block grants or per capita caps for Medicaid, which provides medical coverage for low-income Americans and those with disabilities.

Weir said the NDSS was opposed to the Medicaid changes and to anything that would endanger the ACA’s protections for those with pre-existing conditions. But the organization under Weir opted for a quieter strategy than other groups. She said it engaged directly with congressional leadership on these concerns.

“I felt and our organization and our board felt at the time that if we could meet directly with Senator (Mitch) McConnell and/or his senior staff that was a better opportunity to have an open dialogue rather than firing off angry, viral tweets,” she said.

Borrowing a line from the musical “Hamilton,” she said her goal was to make sure the NDSS was in the “room where it happens.” But this approach caused tensions that culminated in severing ties with the Consortium for Citizens with Disabilities, the largest coalition of national disability organizations.

“Some disability organizations like CCD didn’t like how I ran NDSS by meeting with everyone and understanding that forward progress for people with disabilities was not a zero-sum game. While others refused to meet with the administration and Republican leaders during that time, we got things done,” Weir said.

She pointed as an example to the 2017 tax cut signed by Trump, which included two provisions designed to help individuals with disabilities save money.

Even though the Affordable Care Act changes never became law, some activists remain critical of how Weir handled the health care debate and are skeptical of her commitment to Medicaid.

“We want to see candidates make policy commitments related to defending Medicaid, defending the ACA and addressing the many disability programs and priorities that have come under attack in the last three years,” said Ari Ne’eman, an autism rights activist who served on the National Council of Disability under Obama.

“In the absence of those commitments, I think people are concerned.”

Weir’s decision to become more outspoken on abortion also raised questions about partisanship. This year, while still serving as president of the NDSS, she was keynote speaker at a banquet for Kansans For Life.

“I don’t agree with the notion that it’s right to terminate a pregnancy based solely on a prenatal diagnosis of Down syndrome. Individuals with disabilities are vital to every fabric of our society in this beautiful country,” said Weir, who was joined at the KFL event by Kayla McKeon, an NDSS grassroots advocate who she called the first lobbyist with Down syndrome.

Letters from lawyers

Internal strife over policy culminated in the March 2017 firing of Heather Sachs, vice president for advocacy and public policy. A string of staff departures followed.

“I had to make difficult decisions. And that included hiring and firing decisions in the best interest of the people I represented… And I’m just not going to comment on personnel matters,” Weir said when asked about the staff departures.

In a follow-up email, she said the decisions were made with full support of the NDSS and to her knowledge “no employee who was terminated with cause ever pursued legal remedies against the organization for a wrongful termination.”

Kelly Kulzer-Reyes, a California parent named the NDSS’ 2016 ambassador of the year, pointed to the staff exits in a Facebook post announcing her decision to leave the volunteer program in October of 2017.

“The Betsy DeVos Photo Event was bad. Please own that,” Kulzer-Reyes said. “The mass exodus and removal of incredibly talented staff was worse. Please own that.”

A Change.org petition circulated among parents that criticized the NDSS’ leadership.

Levine said she signed it and promoted it on Facebook. A few days later she received a call from NDSS attorneys who told her they had reason to believe she knew who wrote the petition and that she could face a subpoena if she did not cooperate, she said.

“Am I hallucinating?” Levine remembered thinking at the time. “It was that bizarre.”

Another former parental ambassador, who requested anonymity to speak candidly, said she also received calls from lawyers after leveling public criticism.

“I remain anonymous because I simply do not have the money or emotional bank account to fight the deep coffers of the NDSS and Sara Hart Weir,” the parent said.

Sachs, the former vice president, received a cease and desist letter from NDSS’ lawyers accusing her of writing the petition under a pseudonym. An attorney for Sachs responded that the claim was untrue and unsupported by any evidence, according to copies of the letters obtained by The Star.

In July 2018, Weir filed a police report against Sachs, alleging that she assaulted her by grabbing Weir’s arm at a Down syndrome policy conference in Dallas. Sachs’ attorney called the claim a “total fabrication” in a response letter to Weir’s attorney and said that she had attempted to shake her hand.

Weir’s police report states that she had no visible signs of injuries. Two eyewitnesses, who both spoke to The Star on condition of anonymity, gave contradictory accounts of the incident, which did not lead to any legal action.

In a statement to The Star, Sachs, who now works for another nonprofit, did not comment on the details of her disputes with Weir, but did accuse the NDSS of attempting to silence critics.

“There is no excuse for leadership of an organization to attack and attempt to silence parents, staff members, self-advocates and other disability groups who disagree with policy positions, and I could not stay silent about these attacks,” she said.

Weir declined to comment on the lawyers’ letters or the police report, describing them as personnel issues.

Camille Franco, a former program manager at NDSS, said Weir and other NDSS officials requested to see her personal text messages after a coworker reported to them that she was still in communication with Sachs.

“I lost over 20 pounds working for her just because I couldn’t eat. And I couldn’t sleep. I hated myself working there,” said Franco, who first became involved with the group as a college intern because of her cousin’s Down syndrome.

Franco said she considered the request to see her texts an invasion of privacy and chose to step down from her position instead. Shortly after that, in April of 2017, she received a cease-and-desist letter from NDSS attorneys who accused her of stalking Weir.

She believes that Weir or someone else at the NDSS may have obtained access to her private messages to family and friends through her Apple account based on the letter, which stated that she “inappropriately called her derogatory names.”

NDSS took no further action after Franco’s lawyer raised cybersecurity concerns, she said.

“Sara decided to go after a 21-year-old for really no apparent reason besides the fact that I said not nice things about her,” Franco said.

Franco said that most NDSS staff are people who like her have a personal connection to Down syndrome, which made it difficult to accept some of the policy moves the organization made following Trump’s inauguration.

“It was a hard pill to swallow,” she said. “When it comes to things that were going to affect my cousin, things that were going affect Heather’s daughter, we have a lot at stake.”

Another former staffer, whose time at the NDSS came after Sachs’ and Franco’s departures, praised Weir’s style of management.

“Sara’s incredibly fair. She wants you to do your work, to get your work done and do it well. She will never walk away from a situation where you don’t know where you stand,” said Emily Kaczmarczyk, who worked as a program manager from the summer of 2017 until this month.

NDSS declined to comment on the personnel issues, but Gordon Spoor, chairman of the NDSS board of directors, issued a statement praising Weir’s leadership.

“The National Down Syndrome Society is proud of our former President and CEO. She was instrumental in foundational changes at NDSS and for all individuals in the Down syndrome community. We wish her the best in her future public service endeavors,” he said.

© 2019 The Kansas City Star
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