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Health Insurance for Children with Special Needs: Letter from U.S. Senator Dianne Feinstein

Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist | Shield HealthCare
03/28/17  11:29 AM PST
Health Insurance for Special Needs Children

Children with special needs have complex medical issues that cost families dearly.

As the future of health insurance for special needs children becomes more uncertain, this mom appeals to her representative for continued services and support for her child.

Read this mother’s letter and U.S. Senator Dianne Feinstein’s reply below.

Letter from the Mother of a Special Needs Child:

Health Insurance for Special Needs Children

The U.S. Senate has voted to take away important health benefits that have been part of the Affordable Care Act (ACA). This would  have a drastic effect on my son Ben’s present and future health care.

Because of Ben’s developmental and medical issues, my ability to work is severely limited, and we rely almost completely on my husband’s income as a police officer. Even with excellent coverage and secondary Medicaid for Ben, our medical bills far exceed our flexible spending account, and we incur hundreds of dollars a month in medical expenses. Without Ben’s secondary Medicaid and Children’s Health Insurance Program (CHIP) Programs, the additional copays and deductibles we would face would add up well into the ten thousands a year.

When choosing to have and then adopt our boys with Down syndrome, we took a leap of faith, and the safety net of insurance and Medicaid has kept us from financial ruin. If that safety net is eliminated, will people have more second thoughts about bringing children with special needs into the world? Will people even consider adopting children with special needs if it could lead to financial disaster?

Reply Letter from U.S. Senator Dianne Feinstein:

Health Insurance for Special Needs Children

First, thank you for sharing your story with me. Although I am sorry to hear of the health complications that have impacted you and your family, I am pleased to know that the ACA has been beneficial to you. I hope this letter finds you and yours in good health.

I am a strong supporter of the ACA. This law improves our nation’s health care system by requiring insurers to use at least eighty percent of premium payments for medical care, preventing insurance companies from setting annual or lifetime limits on coverage, and by allowing young adults to stay on their parents’ health insurance until age 26. The ACA also prohibits insurers from denying coverage or charging higher premiums to women, and guarantees access to important preventive health services and screenings for women and babies. I believe it would be a serious mistake to repeal these policies, which have helped over 20 million individuals gain health insurance and have provided benefits and protections to all Americans.

I understand you have serious concerns about access to health care through the Affordable Care Act under the Trump administration. Please know that President Trump does not have the ability to repeal the ACA by himself. Significant changes to the law would require passage through both the Senate and the House of Representatives. As a Senator, I will continue to fight to ensure that all individuals, regardless of their health status, have access to health care.

Additionally, if at any point you or your loved ones are having difficulty accessing health care, please do not hesitate to call my Washington, D.C., office. My staff are available to speak with you, provide additional information, and see if there is assistance my office can provide.

Again, thank you for your letter.  If you have additional questions, do not hesitate to call my Washington, D.C., office at (202) 224-3841.  Best regards.

More Support for Families with Special Needs Children:



  1. Lisa vonDaggenhausen
    Posted March 31, 2017 at 5:48 pm PST

    I have a Son with Down Syndrome,he is the Best of the Best,smart fun easy going,talks very good’i am blessed,and I hope that all these special needs people can have Insurance and not have to worry about it

  2. Posted April 3, 2017 at 10:15 am PST

    Thank you for your comment, Lisa!

  3. Loraine
    Posted August 25, 2017 at 11:50 am PST

    I need help my 9 yr old daughter has Down syndrome we had Medicaid in NM and we are relocated in Texas we have been denied for Medicaid and chip. Here we are with no insurance what can I do?

  4. Posted August 25, 2017 at 3:19 pm PST

    I’m sorry you’re having trouble! Have you looked into the STAR Kids program? Here is a link to the website: https://hhs.texas.gov/services/health/medicaid-chip/programs/star-kids. Texas Parent to Parent is another good resource: https://www.txp2p.org/services/services-for-parents-pathway-to-adulthood/services-and-supports. I found more resources here: http://www.dsact.org/resources/health-care/. Hope that helps!

  5. Amanda Crockett
    Posted February 9, 2018 at 9:30 am PST

    Hi. I am having trouble finding a supplement insurance for my daughter. She has a chromosome abnormality that has caused multiple disorders including heart complications and hypotonia. We are located in Louisiana. We have BCBS as a primary but it only covers a fraction of her medical costs. We had Medicaid up until December but are no longer qualified. I’m trying to find a plan that can cover what (or at least a percentage of what) Medicaid use to pickup. Do you have any resources or recommendation you could offer? I greatly appreciate your help. Thank you. AC

  6. Posted February 9, 2018 at 4:00 pm PST

    Hi Amanda, Have you looked into applying for The Children’s Health Insurance Program (CHIP)?

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