The American Association of University Women recently published a survey on the treatment of Down syndrome and their findings are alarming.
Their report notes that almost one-third of respondents felt “uncomfortable” and half reported “an increase in their anxiety or depression.”
In addition, half said they experienced “serious physical symptoms” like joint pain, arthritis or difficulty swallowing, and a third had a “serious emotional or social problem.”
There are some good things about the survey.
For one thing, nearly half of those surveyed said they felt more “safe” with their own children, and nearly one-quarter of them said they had a positive attitude towards their disabilities.
“We’re not seeing the same amount of support and assistance from the government,” Dr. Joanne Kline, a pediatrician and assistant professor at Boston Children’s Hospital, told ABC News.
As for the federal government, she noted that more than 80 percent of those who received Medicaid and the federal Children’s Health Insurance Program’s Children’s Supplemental Nutrition Assistance Program (CSNAP) were covered by the government program.
And that includes children with disabilities who are eligible for both Medicaid and CSNAP.
While there are many more questions to be answered, the CDC, and the National Institute of Health, which runs the federal funding, have a very promising strategy.
One is to expand the Medicaid eligibility to include children with Down syndrome.
That would give them the financial support they need to access the support and services that are available to adults with disabilities.
Another is to provide more funding for research.
Currently, a quarter of children with special needs get no or limited services.
The CDC is looking into ways to expand Medicaid eligibility for children with autism to include the developmental disabilities that affect the autism spectrum.
Another step is to create a more permanent program for those who are living in rural areas, so that they can live in urban areas.
But all of those ideas, along with new funding from Congress, are years away.
Dr. Kline told ABC that the federal Government Accountability Office needs to be informed on all of these issues.
She also said that the CDC and other experts are needed to help us understand how to address these problems.
If Congress truly wants to help people with disabilities, they need the answers and the funding to move forward.
Follow Anna Friel on Twitter: @afriel.
ABC News’ Kate Mertens contributed to this report.