Monday, September 11, 2017

Help Prevent the Removal of Critical ADHD Protections!

The US Department of Education Requests Comments Before it Removes Regulations and Guidance


the CHADD Public Policy Committee


The US Department of Education has issued a list of regulations and guidance to eliminate under Executive Order 13777, “Enforcing the Regulatory Reform Agenda.” CHADD has become aware that the ADHD Guidance is on this list. The Department is asking for public comments about which regulations and guidance to keep, remove, or modify. CHADD appreciates this opportunity and would like everyone to show support for protecting students’ rights. If you want to tell the Department how important the ADHD Guidance is to our children, you can submit your own comments asking the US Department of Education to retain the ADHD Guidance—officially called the “Dear Colleague Letter and Resource Guide on ADHD”— as active guidance.

Photo by Aaron Burden on Unsplash


Background information on the ADHD Guidance

  
On July 26, 2016, the Office of Civil Rights of the US Department of Education issued guidance to every public school district in the country about the implementation of Section 504 of the Rehabilitation Act of 1973 for students with ADHD. The Guidance provides clear technical assistance that helps teachers understand the nature of ADHD and how effectively to provide education services to students with ADHD, consistent with the requirements of Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA).
For example, the Guidance describes certain behaviors that could indicate a student has ADHD and should cause a school district to consider conducting an evaluation. Among other things, the Guidance states that a student with ADHD may need behavioral and executive function supports.  

Section 504 is a civil rights law that prohibits discrimination on the basis of disability in programs or activities receiving Federal financial assistance, including public elementary and secondary schools as well as charter schools. The US Department of Education enforces Section 504 through OCR.  

On February 24, 2017, President Trump signed Executive Order 13777, “Enforcing the Regulatory Reform Agenda,” which directs federal agencies to identify regulations and guidance to eliminate. The Department of Education has issued a list of regulations and guidance it is considering. The ADHD Guidance is on this list. The Department of Education is asking for public comments about which regulations and guidance to remove, keep, or modify.

CHADD worked hard to obtain the ADHD Guidance to protect the civil rights of students with ADHD from preschool through high school. CHADD provided significant input to Office of Civil Rights of the Department of Education. Through its Public Policy Committee, CHADD maintained ongoing and active discussion with OCR from November 2013 through July 2016. Based on the results of a survey that we conducted with our membership, we shared the concerns of our members about the implementation of Section 504 and the effects on their children. In response to many requests from OCR, we provided scientific research findings and other knowledge about ADHD. For more information, read our previous blog on the ADHD Guidance.

What YOU can do


We cannot lose this Guidance now! We must tell the Department of Education how important this guidance is to students with ADHD.

 
Until September 20, 2017, everyone has the opportunity to weigh in with the Department of Education and Education Secretary Betsy DeVos to show support for protecting students’ rights. CHADD will submit our comments urging Secretary DeVos to keep the guidance.

Individuals can submit comments as well. If you want to tell the Department how important the ADHD Guidance is to our children, you can submit your own comments here asking the US Department of Education to retain the ADHD Guidance—officially called the “Dear Colleague Letter and Resource Guide on ADHD”— as active guidance.
  

NOTE: At the top of your comments you MUST INCLUDE these three things:

Remember, if you want to submit comments, you must take action before September 20!

HOW TO SUBMIT A COMMENT

  • Submit it here before 11:59 PM ET Wednesday, September 20, 2017.
  • Click on the green “SUBMIT A FORMAL COMMENT” button on the top right hand side and the comment form will open. You can type a comment directly into the box or just write “see attached comment” and upload a Word or PDF document after pressing the button.
  • You will then be asked to add information about yourself.
  • Check the preview to see how your comments will appear once submitted, and then check the box: “I read and understand the statement above.”
  • Finally, hit “SUBMIT COMMENT” on the bottom of the form.

Comment Deadline 11:59 PM ET Wednesday, September 20, 2017

Monday, August 28, 2017

Atlanta, Here We Come!

guest blog by Zara Harris, MS, OT


Atlanta is one of the best-ever venues for our Annual International Conference on ADHD, jointly hosted by CHADD and ADDA this year.

First of all, it is easy to get to as Atlanta is a hub airport. Second, to get to the Hilton Hotel from the airport, you take the MARTA train directly from the baggage claim area to the Peachtree Center—for just $3.50. Once you’ve arrived at the center it is a short roll of your suitcase to the hotel.

The hotel is great—the floors are numbered, except for the Galleria in the basement. All the conference meetings will be on the second floor along with the plenary meeting room and the registration area. The rooms also have numbers—no need to hunt for the Atlantic Ballroom IV! The exhibition, the posters, and the other meeting spaces will be on the Galleria level. So all in all, it will be easy to find your way around the conference.

Apart from several good hotel restaurants, it is an easy walk through bridge tunnels to a food court with all the usual eatery providers. Three stops on the MARTA takes you to the residential area of Midtown and many additional wonderful restaurants.

For those not attending the conference or those who want to take time off, it is a one mile walk or short Uber ride to the Centennial Park, which has the Georgia Aquarium (rated #1 in the country), the World of Coca-Cola center, the College Football Hall of Fame, and the new Civil and Human Rights Museum. A bit further afield are the Margaret Mitchell House, Jimmy Carter Library, Zoo Atlanta, and many other attractions.

Register today for this year’s conference. Early Bird prices run to August 31. If you are willing to be a volunteer, you can get one day free for eight hours of volunteering.

Come one, come all! You won't regret this trip to Atlanta and that’s before all the benefits you will get from attending the CHADD and ADDA conference November 9-12, 2017.





Zara Harris is an occupational therapist with more than thirty years of experience. She is licensed in both the United States and the United Kingdom. Having worked with international schools on three different continents, she is in a unique position to understand the special needs of today's mobile families. Harris specializes in helping students who struggle with handwriting, homework, attention, time management and organization. She serves on the editorial advisory board of Attention magazine and on CHADD’s conference committee.

Friday, July 28, 2017

Understanding Compassion Fatigue

guest blog by Mark Katz, PhD


What can bring loving relationships to a bitter end, pit caring parents against caring teachers, and emotionally deplete even the most resilient among us? The answer is compassion fatigue.

Compassion fatigue is tantamount to exhaustion—emotional, physical, or both. It’s the price we sometimes pay for caring so much and working so hard to improve the lives of others who face various challenges. While the phenomenon has been studied most among those caring for someone suffering from the effects of traumatic stress exposure, many now believe it casts a much wider net.

We find it in parents raising an extremely hard-to-manage child, and in families caring for a loved one with a serious physical or psychiatric illness. We also find it in spouses, partners, and extended family members, in teachers, therapists, and other healthcare providers, and in police officers, firefighters, and emergency room hospital workers. We find it in any relationship where there exists a feeling of compassion for the suffering of another person, ongoing exposure to their suffering, and a sense of responsibility for helping.

When are we at risk? When caring for others obscures our need to also care for ourselves. Are all caregivers at risk? No. Only those with the ability to empathize with and feel compassion for those whose suffering they are trying to alleviate. If you lack empathy and compassion, you don’t have to worry about compassion fatigue. On the other hand, school administrators and others not directly in the line of fire can experience compassion fatigue if the necessary ingredients are present.

While signs and symptoms are known to vary from person to person, the more common ones are similar to those we experience when our emotional fuel tanks are on empty. Examples include:
  • feeling a sense of futility or a sense of hopelessness that better days lie ahead
  • questioning our abilities or even our worth
  • losing patience and the ability to control our emotions
  • difficulty sleeping, feeling tired, and not quite ourselves
  • losing our spark and sense of humor.
For those whose jobs or family members expose them to ongoing traumatic content, experts find that symptoms can actually resemble those associated with prolonged traumatic stress exposure. Some experts use the term compassion fatigue interchangeably with such terms as “secondary traumatic stress” and “vicarious traumatization.”  Charles Figley, PhD, of Tulane University has written extensively about compassion fatigue and differentiates the phenomenon from other terms used in the professional literature.

The good news is that compassion fatigue is preventable—or for those in its throes, reversible. Some experts say it’s simply remembering our ABCs: A = Awareness; B = Balance; C = Connections.
(Learn more from the article and presentation by Angelea Panos, PhD, posted on the Gift From Within website.)

AWARENESS

Overcoming compassion fatigue begins with an awareness of its signs and symptoms. Many caregivers have never heard the term, including those struggling mightily to help a loved one with ADHD. Once aware, they can spot early warning signs and take action to restore balance and connections.

If you're a teacher and love your work but find that it has depleted your compassion fuel tank, it’s not burnout you’re experiencing, but rather compassion fatigue. Teachers and other professionals can visit www.ProQOL.org to learn more about this phenomenon and fill out a Professional Quality of Life Scale.

BALANCE

Self-care plans are critical and should include activities that bring joy, hope, laughter, and gratitude. No doubt, this is easier said than done. Our brains are more sensitive to negative information than positive. But there’s good news. Experts tell us that intentionally paying attention to the positive things in our life strengthens neural pathways to positive memories. This, in turn, can eventually make it easier for us to focus on positive as opposed to negative experiences. Watch the TED talk by brain scientist Kristen Race, an expert on how stress affects the brain. She describes three simple practices for combating stress and significantly improving daily life.
Where to start? Begin by listing activities that restore a sense of calm and balance. Ask others you trust for their ideas. As new ideas come to mind add them to the list. Be sure to include regular exercise.

Learn about the Movement of Imperfection, which is dedicated to helping “imperfect parents” of “imperfect children” learn to see their children’s differences in a new light. Anyoneparents, teachers, therapists, etc.can join and benefit from this movement that has brought laughter, joy, and hope to countless lives.

Keep a gratitude journal. At the end of each day write down three things you feel grateful for. Studies show that practicing gratitude can significantly improve our emotional lives.

CONNECTIONS

Our greatest source of strength is each other. It’s important to restore or actively seek connections with others we value and trust, to whom we can turn for support. Remember that emotions can be contagious. Connecting with others who see the light at the end of the tunnel helps us to see the light at the end of the tunnel as well.


Join others who understand the challenges you are facing. CHADD increases awareness and understanding of the challenges impacting those affected by ADHD, advocates on their behalf, and provides its members with ongoing support and encouragement. Such organizations loom large in efforts to prevent and reverse compassion fatigue. Find out if there is a CHADD affiliate group in your area. You can also learn how to start one.

 

Join an online community dedicated to ADHD where you can safely connect with others. CHADD has now set up two online communities through the social networking site HealthUnlocked: ADHD Parents Together and Adult ADHD Support. These groups provide peer-to-peer support as well as guidance from a credible organization dedicated to supporting individuals and families affected by ADHD. 




A clinical and consulting psychologist, Mark Katz, PhD, is the director of Learning Development Services, an educational, psychological, and neuropsychological center in San Diego, California. He is the author of Children Who Fail at School but Succeed at Life: Lessons from Lives Well-Lived (W.W. Norton & Company, New York, 2016). A former member of CHADD’s professional advisory board and a recipient of the CHADD Hall of Fame Award, Dr. Katz serves on the editorial advisory board of Attention. As a contributing editor, he writes the magazine's Promising Practices column, in which a version of this blog originally appeared. He has been a keynote presenter at numerous national conferences, and has conducted trainings across the US for schools, healthcare organizations, and community groups working to improve educational and mental health systems of care.




Monday, July 24, 2017

Update on the US Senate Effort to Repeal and Replace Obamacare

CHADD Public Policy Committee
The Senate has been preparing to vote on the Better Care Reconciliation Act (BCRA), which would repeal significant portions of the Affordable Care Act (ACA or “Obamacare”) and replace them with alternative policies. However, when it became apparent BCRA might not have sufficient support among Republican senators, Senate Republican leaders began to consider a repeal of many ACA provisions without specific replacement policies (the Obamacare Repeal Reconciliation Act of 2017 or “Clean Repeal”).
Senate leaders plan to bring the legislation up for a vote any day, although it is not clear which bill will be considered. It is possible that amendments may be offered for BCRA, or they might fall back on Clean Repeal, legislation that the Republican Congress passed in late 2015, but was vetoed by then-President Obama.
Because CHADD does not know exactly which bill the Senate is planning to vote on, we don’t know exactly how to advise our members. However, we can report what BCRA looks like now and how it could affect individuals with ADHD. We can also report what the Clean Repeal bill provides and how it could affect individuals with ADHD.
The Better Care Reconciliation Act (BCRA):
The Congressional Budget Office (CBO) has released official estimates about the version of BRCA posted on the website of the Senate Committee on the Budget on July 20, 2017. The CBO estimate shows that BCRA would reduce the deficit by $420 billion over ten years. CBO further estimates that BCRA will result in 15 million fewer people having health care coverage in 2018. By 2026, this number would increase to an additional 22 million Americans lacking insurance, compared to current law.
BCRA makes a number of changes to Medicaid and private health insurance that would, on the whole, make it harder for many families to access ADHD treatment. Most notably, BCRA substantially cuts federal funding for Medicaid, which is a primary payer for millions of children with ADHD. Over time these cuts would lead to reduced benefits, decreased access to health care providers, and would make it harder for families to access ADHD treatment. It would also roll back the Medicaid expansion, which allows many adults to access ADHD treatment. In the individual marketplaces (what is often called "Obamacare"), most families would receive less assistance paying for their insurance premiums, and the insurance they pay for would offer less coverage. This too could substantially limit access to ADHD treatment for millions of families across America.
BCRA could benefit some families. For example, it extends premium subsidies to individuals below the poverty line but who do not qualify for Medicaid and it allows families to obtain premium subsidies if a parent’s employer provides coverage only for the parent. Proponents of the legislation also tout its potential to reduce insurance premiums; however, these effects are still somewhat speculative. Decreases in premiums may be caused in part by insurance plans declining to offer certain benefits, including coverage for expensive prescription drugs, behavioral health services, and mental health care. Although Obamacare required plans to provide coverage for these “essential health benefits,” BCRA would make it easier for states to opt out of providing these mandated benefits. Recent amendments offer additional funding that may reduce premiums for some, but the effects on coverage are uncertain.
Some of the other changes could also impact individuals with ADHD. BCRA mandates a six month "lock-out" period for re-enrolling in health insurance after a period of not being covered. However, the Senate Parliamentarian has ruled this provision violates to the so-called Byrd Rule, which means it could not be enacted without Democratic support (which is unlikely). Individuals with ADHD who obtain health insurance in the individual market would need to pay very close attention to deadlines to avoid coverage lapse. Similarly, BCRA limits the period for which Medicaid coverage can be retroactively applied when a Medicaid eligible individual seeks treatment before enrolling in Medicaid.
BCRA is similar in many respects to the American Health Care Act (AHCA), passed by the House of Representatives in June, and different in other critical ways. Read CHADD's analysis of the AHCA. Read a side-by-side comparison between BCRA, the AHCA, and existing law - especially how it affects mental health and pre-existing conditions.
Obamacare Repeal Reconciliation Act of 2017 (Referred to here as “Clean Repeal”):
CBO has also released official estimates about the Clean Repeal legislation posted on the website of the Senate Committee on the Budget on July 19, 2017. The CBO estimate shows that Clean Repeal would reduce the deficit by $473 billion over ten years. The CBO also estimates that Clean Repeal will result in 17 million fewer people having health care coverage in 2018. By 2026 this number would increase to about 32 million additional Americans without coverage, compared to current law. CBO further estimates that by 2020 about half of the U.S. population would live in areas with no insurer that offered insurance for individual policies purchased through the marketplace or directly from insurers; and that would increase to about three-quarters of the population by 2026. In addition, the CBO estimates the cost of average premiums for individual policies purchased in marketplaces or directly from insurers would increase about 25 percent more than projected under current law by 2018 and would double by 2026.
Clean Repeal would repeal many provisions of the ACA or Obamacare but would retain many of its insurance rules. After Clean Repeal, all plans sold on the individual markets, as well as Medicaid plans, would still be required to cover essential health benefits (EHBs), which include treatments for mental health, behavioral health and substance use disorders. Health insurers would still not be permitted to deny health insurance coverage or charge higher premiums based on having a “preexisting condition,” like ADHD diagnosed before an individual buys health insurance. These protections would continue to help individuals with ADHD. However, the legislation would immediately repeal the penalties for individuals who do not maintain qualifying health insurance coverage (including coverage under government programs like Medicaid) and for employers with 50 or more full-time employees who do not provide qualifying health insurance to their employees. CBO estimates that elimination of these penalties would cause premium costs in the individual marketplace to rise for individuals, such as those with preexisting conditions who needed to retain coverage, and could cause employers to stop offering group plans for employees. These results could make it much more difficult for families and individuals with ADHD to obtain insurance coverage. Starting in 2020, the legislation will repeal Medicaid expansion which has allowed many adults in some states to access ADHD treatment; and premium subsidies that help individuals purchase insurance in a marketplace will also be repealed. This could significantly limit access to ADHD treatment for millions of families nationwide. 
*             *             *
CHADD is dedicated to protecting access to ADHD treatment for families across America. While our members may have different views on the repeal and replacement of Obamacare, CHADD has serious concerns that these bills, if either were enacted, would create significant hardships for many children and adults with ADHD. For these reasons, CHADD has been on the record with Congress and joined organizational sign-on letters in opposition to the legislation.

While CHADD encourages its members to do their own research on the current proposals, we are disseminating the action alert below for those who are interested in making their voices heard in the legislative process. The action alert was prepared by the Mental Health Liaison Group (MHLG), a coalition of which CHADD is a member. The Senate is expected to vote on one of these measures this week, and as early as Tuesday.

Action Alert on Health Reform

What are key changes in the BCRA?
  • Allows insurance companies to offer bare-bones plans with no mental health coverage, as long as they offer a single plan that covers mental health and substance use services. This is a giant step away from parity, or fair coverage of mental health conditions.
  • Provides $45 billion in short-term grant funding to states for the opioid crisis. This is a drop in the bucket compared to the Medicaid funding that will be lost under the bill.
  • Provides a complicated “stability” fund to states. These funds don’t make up for cuts to Medicaid and loss of mental health coverage—and there’s no guarantee they’ll be spread evenly among states or will help people who lose or can’t afford coverage.
What’s unchanged in the BCRA?
·        Leaves fewer Americans with coverage for mental health care;
·        Takes away insurance protections for people with mental health conditions;
·        Effectively ends Medicaid expansion;
·        Cuts and caps Medicaid funding, which will make it harder for people to get medications and mental health services; and
·        Allows states to adopt work requirements for people covered by Medicaid (including those with mental illness) who are not on federal disability (SSI/SSDI);

Want to know more? Read Kaiser’s summary of the revised BCRA. 

What’s next?
Next week, the bill could come up for a vote and pass—unless 3 Republican Senators vote NO.

What to do this weekend (and week of 7/17):
Regardless of whether your Senators are opposed to or supportive of the BCRA, your alerts and social media posts will help emphasize the impact of the bill on people with mental illness.

Note: If you live in a state with Senators who are considered moveable, please put extra effort into reaching out (Alaska, Nevada, W. Virginia, Ohio, Louisiana, Kansas and Arizona). 
  1. Send an alert to your members
  2. Post on social media using #Act4MentalHealth
  3. Tweet directly at your Senators or post on their Facebook page

Alert and social media images




Advocacy alert

Subject line: This bill hurts.
Text: The Senate delayed a vote on the Better Care Reconciliation Act (BCRA), but they are back at it—and they are moving fast. A vote could happen any day.
They have revised the bill and it isn’t better, it’s worse.
New language would let insurance companies offer bare-bones plans with no mental health coverage. This is a giant step away from parity, or fair coverage of mental health conditions.
There will still be less financial assistance and fewer protections for people who buy individual health insurance plans through the marketplace.
The bill still cuts and caps the Medicaid program, which will make it harder for people to get psychiatric medications, case management, mental health services—and even hospital care.
Millions will still lose their Medicaid coverage, including 1 in 10 veterans who rely on Medicaid for health and mental health services.
The bottom line: this bill hurts people with mental illness. But, the fight is not over. Together, we are powerful. Together we can #Act4MentalHealth. Tell your Senators to vote NO on the BCRA.

Facebook post
The Senate has revised the Better Care Reconciliation Act (BCRA) and it isn’t better, it’s worse. The bottom line: this bill hurts people with mental illness. But, the fight is not over. Together, we are powerful. Together we can #Act4MentalHealth. Tell your Senators to vote NO on the BCRA. http://ow.ly/wMIB30dEgF6 

Tweets
Oppose any bill that leaves fewer people with mental health care. Together, we must #Act4MentalHealth http://ow.ly/wMIB30dEgF6

We know that the toughest fights are worth it. Tell your Senators no on #BCRA! http://ow.ly/wMIB30dEgF6 #Act4MentalHealth 

The Senate health reform bill hurts people with mental illness. Tell your Senators: Vote NO. http://ow.ly/wMIB30dEgF6 #Act4MentalHealth


Friday, April 7, 2017

CHADD Is Working with The Mighty!

We're thrilled to announce a new partnership that will bring CHADD's resources in front of The Mighty's wide-reaching readership. We will now have a home on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

Here’s an example of the kind of ADD/ADHD stories on The Mighty: A Letter to the Teacher of My Son With ADHD, From a Mom With ADHD.

We're dedicated to helping people with ADD and ADHD in their lives. With this partnership, we'll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard.


Wednesday, October 26, 2016

You Asked, CHADD Delivers: Online Teacher Training Now Available

by Michael MacKay, JD, MS, CPA


While you can find students with ADHD in every classroom across the country, teachers have limited resources to help them understand, teach, and manage students with ADHD. They receive little pre-service or in-service training in this area. In response to this knowledge gap and pressing need, CHADD has updated its teacher training program and made it available on a state-of-the-art online education platform.

Teacher to Teacher: Supporting Students with ADHD is now available on Pepper, the country’s leading online professional development platform for educators. (Read the press release.) For the first time, educators will have unlimited, on-demand access to the Teacher to Teacher course through self-paced online learning.

Teacher to Teacher helps educators identify common ADHD-related learning problems and learn about proven classroom techniques, interventions, and the latest research to enhance school success for students with ADHD. Designed by teachers for teachers, the program assumes that teachers are overworked and in need of practical classroom tools. Parents who need assistance on how to effectively advocate for their children at school can take the training as well.

CHADD’s next goal is to get the word out to make sure that all schools and teachers across the country are aware of this educational resource.

Last summer, the Office of Civil Rights at the US Department of Education issued a letter clarifying schools’ obligations to students with ADHD. This was seen as necessary because of the numerous complaints the department was receiving about what was actually occurring in the public schools. We all know that what was implemented was a far cry from what the legislators intended, and this letter shows that our voices were heard. The letter:
•    Explains that schools must evaluate a student when a student needs or is believed to need special education or related services.
•    Discusses the obligation to provide services based on students’ specific needs and not based on generalizations about disabilities, or ADHD, in particular.
•    Clarifies that students who experience behavioral challenges, or present as unfocused or distractible, could have ADHD and may need an evaluation to determine their educational needs.
•    Reminds schools that they must provide parents and guardians with due process and allow them to appeal decisions regarding the identification, evaluation, or educational placement of students with disabilities, including students with ADHD.

This is a wonderful improvement for our ADHD community, and we are pleased that CHADD’s Public Policy Committee assisted in its development. It remains to be seen how it will affect what actually occurs at our schools with our children, however. CHADD, of course, will continue working with the US Department of Education in monitoring compliance.

While the new guidance clarifies the obligations, it is not at all clear how individual schools and teachers will find the resources (primarily time) to comply and accomplish the aims of the legislation (and its clarification). This is hardly a new issue for schools (or other publicly funded services where more is demanded yet resources are constrained). The relevant question then becomes how can we help, what can we do to assist in accomplishing these, oh so necessary and appropriate goals. The scenario of 30 students with 10 percent having special needs is all too common and typically presents the teacher with a decision as to how to allocate time, knowing that not all 30 students will be comparably served, as required by the teacher’s own sense of equity as well as the law.

With Teacher to Teacher: Supporting Students with ADHD available on-demand to every teacher in the country, all educators will now have access to the best practices and strategies.

If you want to learn more, visit the Teacher to Teacher page on the CHADD website or email Trish_White@chadd.org. Share this blog or the T2T flyer with your child’s teacher and school. Help us get the word out!


Michael MacKay, JD, MS, CPA, is the president of CHADD.