A New Affordable Care Act Resource

The Arc is excited to be part of the National Disability Navigator Resource Collaborative (NDNRC) a new resource for people helping the uninsured to gain coverage through the health insurance marketplaces.  The collaborative is led by the American Association on Health and Disability (AAHD) and is supported by a one-year grant from the Robert Wood Johnson Foundation.

The Collaborative intends to develop training and technical assistance materials to respond to the need for cross disability training for people who are helping with the enrollment process.  The Collaborative will address issues particularly important to people with disabilities such as the interplay between the private marketplaces, Medicaid and Medicaid alternative benefit plans, the need to carefully compare plans especially in the rehabilitation and habilitation benefits, the pharmacy benefits and mental health and substance abuse parity.

The funding for this project is scheduled to begin this week and the first meeting of the advisory organizations will take place in late October.  The Arc recognizes the critical need for this work and looks forward to being a part of the effort.

Some Children with I/DD at Greater Risk from Flu

Young woman with the flu

Photo via nataliejohnson (Flickr)

The Centers for Disease Control and Prevention (CDC) just published a report on the results of an on-line study they did during the 2011-2012 influenza season regarding vaccination rates for children with neurologic and neurodevelopmental conditions.  Shockingly, the report indicated that only HALF of children surveyed were vaccinated or had an appointment to be vaccinated and out of those children who indicated they had an intellectual disability it was only slightly better at 52%.  Numbers like this are alarming due to when you consider the 2009 flu outbreak in which 336 children died. Of those, 146 were children with neurologic or neurodevelopmental conditions (76% indicating they had an intellectual disability).

The majority of families rely and trust their physician to provide them with information, expertise and advice on what is best for their child to keep them healthy. However, the study also found that even after this outbreak occurred many physicians still do not rate children with an intellectual disability as being at a high risk and needing the vaccination.

According to the CDC bulletin a child with an intellectual or developmental disability that requires special needs is at a higher risk than others due to the fact that they are more susceptible to developing complications and infections from the flu virus. These complications can include pneumonia, bronchitis, and can also increase the effects of already current chronic health problems. These complications can lead to hospitalization and in severe cases death.

While every parent has the right to choose whether to get their child vaccinated or not, studies like this will help to increase awareness of prevention and knowledge of parents and physicians to help them to make more informed decisions.

As fall rolls in and the flu season quickly approaches you can visit the HealthMap Vaccine Finder if you need help finding a location in your area to get vaccinated.

Act Today to Protect Yourself from the Flu

Guarding yourself and your loved ones during flu season has always been important, but a recent study by the Centers for Disease Control (CDC) has shown how important it truly is for individuals with intellectual and developmental disabilities. The study showed that children with intellectual disabilities, cerebral palsy, and other neurologic disorders were at a great risk of complications from the influenza virus.

The study, which focused on the 2009 H1N1 flu outbreak, found that a disproportionately high number of kids with neurological disorders died from the virus. The 2009 flu season was particularly severe and the number of children who passed away was five times higher than the median for the previous five flu seasons.

“We’ve known for some time that certain neurologic conditions can put children at high risk for serious complications from influenza,” said Dr. Lyn Finelli, chief of the surveillance and outbreak response team in CDC’s Influenza Division. “However, the high percentage of pediatric deaths associated with neurologic disorders that occurred during the 2009 H1N1 pandemic was a somber reminder of the harm that flu can cause to children with neurologic and neurodevelopmental disorders.”

Now is the time to protect yourself and your family. The CDC is recommending that everyone over 6 months old get an annual influenza vaccination. To learn more about the flu and where to get a flu shot visit the CDC website.

The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

Washington, DC – The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.

“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act.  Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities.  It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long.

“But the ruling is not perfect for people with I/DD.  The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with I/DD who would have benefitted from the expansion could be left behind.  Medicaid is an incredibly important lifeline for people with I/DD, providing health care and long term services and supports.

“We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc.

Who Decides Essential Care?

The health care reform law provides categories of care that must be provided for customers of the health-insurance exchanges that are launching in 2014.  An article in today’s Wall Street Journal, “Defining Essential Care,” points out that “The next big issue for the federal health law as it moves toward implementation is how regulators will define so-called essential benefits—the basic medical services that health plans must cover under the law.”  So the details are left up to regulators who are now starting to develop the rules on what is an “essential” health care service and what is not.

Habilitative services, used by such children with Autism and other developmental disabilities, have become a particularly contentious point in the debate. The Arc’s Marty Ford provides an example of the difference between rehabilitative and habilitative services. (Visit our website to read Marty’s prior testimony on the importance of defining habilitation as an essential service.)