Finding care for children with medically complex or rare conditions can force parents to tap into networks of highly specialized physicians and hospitals scattered around the country.
This is especially challenging when the children are covered by Medicaid, because each state-run program has a different benefit package, payment structure and provider network. Conflicting regulations and paperwork requirements can delay treatment and lead to unnecessary hospitalizations. Medicaid’s state-based rules also have thwarted efforts to develop a national clinical database researchers could use to find ways to improve the care of children with rare conditions.
A new bill in Congress would amend the 50-year-old Medicaid law to make it easier for health care providers in different states to coordinate the complicated care of these kids.
The proposal — the Advancing Care for Exceptional Kids Act — also calls for the creation of a national database of Medicaid claims data that researchers could use to study complicated conditions that affect one in 25 children nationwide. Continue reading Disability Scoop: Lawmakers Look To Improve Care For Kids With Complex Needs
Read President Obama’s proclamation celebrating the 24th anniversary of the Americans with Disabilities Act (ADA).
The ADA provides civil rights protections for Americans with disabilities so they have equal access to participate in the classroom, workplace and in their communities. For more information about the ADA, visit ADA.gov or read “10 Things You May Not Know about the ADA.”
Visit Presidential Proclamation on the 24th Anniversary of the Americans with Disabilities Act
Dylan B. Randall could not speak or stand. He never tasted food because he was fed through a gastric tube in his belly. He breathed through a ventilator; his own saliva would choke him unless a nurse cleared his throat every few minutes.
It was a daily struggle to keep Dylan alive, much less educate him. And when his public school could not deliver all the daily therapy the then 5-year-old was supposed to receive, his parents asked that New York City pay for what they believed was the kind of education Dylan needed: a private school for disabled children.
Rather than pay, however, the city decided to fight. For several months, the Randalls and their lawyers battled with city lawyers, until Nov. 18, when a hearing officer ruled in the family’s favor. Not only did the boy deserve placement in a private school, the hearing officer, Diane R. Cohen, said, but he was also owed hundreds of therapy sessions that the city had failed to deliver during his kindergarten year. “For a student who is unable to ambulate on his own and is dependent on the provision of therapies for every aspect of life’s functions, the failure to consistently provide related services is a serious impediment to the student’s well-being,” Ms. Cohen wrote.
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The Obama administration is tightening its oversight of the way states educate special-needs students, applying more- stringent criteria that drop the number of jurisdictions in compliance with federal law from 38 to 15.
Under the new criteria, Maryland is among the states that no longer meet federal requirements, joining the District, which has been out of compliance for the past eight years. Virginia meets the demands of federal law under the new rules.
Congress has guaranteed severely disabled students the right to a “free and appropriate” education since 1975. The 1990 Individuals with Disabilities Education Act (IDEA) requires public schools to meet the educational needs of students with disabilities, an estimated 7 million students.
The federal Education Department distributes $11.5 billion annually to states to help pay for special education and monitors their performance.
Until now, the agency considered whether states evaluated students for special needs in a timely manner, whether they reported information to the federal government and met other procedural benchmarks.
Education Secretary Arne Duncan said Tuesday that his department for the first time will also consider outcomes: How well special-education students score on standardized tests, the gap in test scores between students with and without disabilities, the high school graduation rate for disabled students and other measures of achievement.
“Every child, regardless of income, race, background, or disability, can succeed if provided the opportunity to learn,” Duncan told reporters. “We know that when students with disabilities are held to high expectations and have access to the general curriculum in the regular classroom, they excel.”
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The Senate Health, Education, Labor and Pensions (HELP) Committee quickly approved legislation Wednesday to reauthorize federal autism research and services for five years.
The bipartisan bill, which now advances to the Senate floor, is identical to a measure passed by the House on Tuesday night and has a strong likelihood of becoming law this summer.
The bill’s approval in committee is a victory for autism advocates who pushed Congress to renew programs before lawmakers leave for the August recess. The underlying statute, the Combating Autism Act, is due to expire at the end of September unless it is extended.
The new legislation would require the Health and Human Services secretary to designate a deputy to oversee federal autism research and services. The official would help coordinate activities related to autism across federal agencies to ensure they are not duplicative.
The measure also orders the government to study the needs of autistic children as they transition to adulthood.
The HELP Committee advanced the measure on a voice vote Wednesday with no amendments, according to a committee spokeswoman.
It is called the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act instead of the Combating Autism Reauthorization Act. The title change is a nod to individuals with autism who called the old name hurtful.