UNITED STATES DISTRICT COURT

FOR THE SOUTHERN DISTRICT OF OHIO

WESTERN DIVISION

PRETERM-CLEVELAND, et al. )

)

 Plaintiffs, )

)

v. ) Case No. 1:18-cv-109

) Judge Timothy S. Black

LANCE HIMES, DIRECTOR, et al. )

)

 Defendants. )

)

______________________________________________________________________________ 

DECLARATION OF EMILY CHESNUT

______________________________________________________________________________ 

I, Emily Chesnut, pursuant to 28 U.S.C. §1746, declare under penalty of perjury that the 

following is true and correct: 

1. My name is Emily Chesnut, and I reside with my husband and our four children in the 

Cincinnati area.

2. One of our children, our 7-year old daughter Nora, has Down syndrome. 

3. I submit this Declaration because I want to speak on behalf of my family and many 

friends who also love someone with Down syndrome. 

4. I believe that, in passing and signing Ohio House Bill 214, Governor Kasich and state 

legislators used our child as a political tool to promote their own agenda of restricting 

access to abortion. They do not care about Nora. If they did, they would devote their 

efforts to making sure that children born with Down syndrome have what they need to 

live a healthy, full life.

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5. Children with Down syndrome need affordable health insurance coverage to pay for the 

medical treatments and therapy that many require. 

6. Half of all individuals with Down syndrome have congenital heart defects – including 

Nora who had open heart surgery at seven months old. 

7. Individuals with Down syndrome are more likely to have issues with their eyes; Nora has 

had eye surgery. 

8. Individuals with Down syndrome are also more likely to have gastro intestinal issues, 

respiratory issues, thyroid issues, and hearing issues/hearing loss. And the list goes on. 

9. These medical issues are treatable and can have positive outcomes. Individuals with 

Down syndrome thrive when given supports such as occupational therapy, speech 

therapy, glasses, hearing aids, walkers, and many more tools. If politicians were 

concerned with people with Down syndrome, they would be working to assure that 

families had adequate health care coverage, to access these treatments and therapies.

10. If Ohio lawmakers wanted to make Nora’s life better, they would also increase funding 

for developmental disability services. To access these services, one needs a “waiver"

(because, by accepting services from my county Board of Developmental Disabilities, I 

am waiving Nora’s place in an institution). When Nora was born, I was told to call and 

get her on the waiver waiting list so that – someday – I could hope to get a waiver. 

11. The length of the waiting list varies by county, but the median waiting time in Ohio 

is more than 9 years, according to a report by the Ohio Colleges of Medicine Government 

Resource Center for the Ohio Developmental Disabilities Council, 

http://www.fixthelist.info/uploads/8/3/7/2/83720792/dd_council_report.pdf. 

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12. My family needs the waiver to obtain services for Nora to try to meet our long-term goal 

for her to be an active, independent member of the community. She is currently in first 

grade, so such services would now focus on her academic, speech and occupational 

therapy needs. When she graduates, waiver funding would help Nora with transportation 

to/from a job, on-site job coaching to be successful, and support so that she could live in 

an apartment on her own. 

13. The current waiver system is very broken, in addition to the nine-plus year waiting times. 

Families (including mine) are confused by the bureaucratic complexity and the inability 

to know when one’s turn will come up. If my law makers cared about Nora and her peers 

with Down syndrome as much as they are claiming, they would fund Developmental 

Disability waivers and support County Boards with additional funding. 

14. My lawmakers would also be working to address other legislative needs, such as the need 

for inclusion in schools, employment opportunities and independent living. 

15. Having a child with Down syndrome has been life-changing for me and for my family. It

has given me new paths in life that I never would have found before Nora. Now I am an

advocate on Down syndrome issues so that future families can see more positives than

negatives, so that inclusion is the norm, and so that a diagnosis of Down syndrome isn’t 

as scary.

16. No parent should have to embark on this journey uninformed. A pregnant woman should 

be able to have a frank, honest conversation with her doctor about what it will mean to 

have a child with Down syndrome. She should have all the information she wants, and be 

encouraged to ask more questions, so she can make this very personal decision freely and 

knowledgeably. 

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17. H.B. 214 does the opposite, however. This bill makes it dangerous - impossible - for a 

pregnant woman to have an honest conversation with her doctor. A woman will know 

that, if the doctor learns that she is worrying about a fetal Down syndrome diagnosis, she 

will not be able to make the decision on her own whether to have the baby, and will 

instead be coerced by the state to carry the pregnancy to term. 

18. I understand that talking about Down syndrome tugs at heartstrings. I understand the 

fierce pride and protectiveness that parents of children with Down syndrome feel. I feel 

it, and my husband does too. 

19. But this bill is not about helping people with Down syndrome or their families. It is not 

about protecting Nora - or any child with Down syndrome - or about making their lives 

better. This bill is about putting another hurdle in front of women who have a 

constitutional right to make their own decisions about their bodies and their futures. 

20. The politicians who enacted H.B. 214 are using my daughter and her peers as a pawn in a 

political effort that is only going to harm women and make it harder for them to make the 

right decision for themselves - and their families. 

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