April 16, 2014

April 16 Washington DC Udpate

April 16 Washington DC Udpate

Washington DC Update 4/16/14

{Don’t forget to check out the Family Voices/NCFPP ACA webpage!}

Greetings from Washington!  Two big pieces of news this week from Secretary Sebelius:  (1) she announced that 7.5 million people have signed up for health insurance under the Affordable Care Act (ACA); and (2) she announced that she is resigning. President Obama has already nominated Sylvia Mathews Burwell for the position. Burwell currently heads the White House’s Office of Management and Budget (OMB).


Disaster Preparedness Planning for Family Caregivers. Wednesday, April 16, 2:00-3:30 ET. The HHS Office of the Assistant Secretary for Preparedness and Response and the Administration for Community Living will offer this webinar to provide information to assist family caregivers in developing both a personal preparedness plan and a plan for individuals they support. Presenters will discuss preparedness for caretakers of children with special health care needs, and elderly individuals who are medically fragile or have dementia. For more information see http://www.phe.gov/Preparedness/planning/abc/Pages/caregiver-webinar.aspx. [Hit cancel if asked for username.]  Note that Peg Kinsell, of the NJ Statewide Parents Advocacy Network – a Family Voices SAO and the state’s F2F - will be one of the presenters.

Hear the presentation by phone and see the slides on-line:

Toll Free Number: 888-325-0345

Participant passcode: 813-1392 (required)

Restrictions may exist when accessing freephone/toll free numbers using a mobile telephone.

Live Meeting™ Net Conference Access Information for Participants

URL: https://www.mymeetings.com/nc/join/

Conference number: PW4462938

Audience passcode: 8131392

Participants can join the event directly at: https://www.mymeetings.com/nc/join.php?i=PW4462938&p=8131392&t=c

Inclusive Health Promotion Strategies. Wednesday, April 16, 2:00-3:00 ET. This webinar, sponsored by The Arc, will provide attendees with updates on health promotion and health education efforts that are inclusive of people with intellectual and developmental disabilities from the perspective of three different University Centers of Excellence in Developmental Disabilities. Attendees will learn about current health promotion resources, strategies for influencing medical school curricula, and the new HealthMeet resource, Understanding Health and Health Promotion for People with ID (www.iddhealthtraining.org). Register here.  

State Innovations: Updates from the Minnesota Health Care Home Initiative. Thursday, April 17, 11:00-12:00 ET. The National Academy of State Health Policy is sponsoring this webinar on Minnesota's Health Care Home (HCH) initiative, which includes 322 certified Health Care Homes, and has lowered costs for Medicaid enrollees by more than 9% since the program began in 2010. This webinar will provide an overview of Minnesota's Health Care Home initiative, a review of key findings of the 2014 HCH Evaluation Report to the Minnesota State Legislature. Register here.

Autism Spectrum Disorder: From Numbers to Know-How. Tuesday, April 22, 1:00-2:00 ET. The CDC has announced its first-ever Public Health Grand Rounds on autism spectrum disorder, featuring presentations on autism etiology, surveillance, early identification and screening, and evidence-based intervention. CDC asks that this information be shared widely. You can receive free training and continuing education opportunities/contact hours for watching Grand Rounds. Visit http://www.cdc.gov/about/grand-rounds/index.htm to register.

There are two ways to attend:

  1. A live webcast will be available. Visit http://www.cdc.gov/about/grand-rounds/ to watch the event. OR
  2. Attend in person at in Atlanta. This requires having prior security clearance and a U.S. state-issued photo ID. Please send your request to attend in person to the CDC Grand Rounds Team. (International visitors are required to submit a copy of passport and U.S. state-issued photo ID 10 days prior to the session for clearance.)

Starting and Supporting Family Advisory Groups. Thursday, April 24, 12:00-1:00 ET. Hosted by the National Center for Medical Home Implementation and the American Academy of Pediatrics, this webinar will define the term “family advisory group” and explain its potential effectiveness as part of a family-centered medical home approach to providing care. Additionally, it will describe strategies for implementation and provide examples of family advisory groups within actual pediatric practices. Register here. This webinar is part of a series Fostering Partnership and Teamwork in the Pediatric Medical Home (past webinars available on this website).

Medical Home Implementation and Innovation at the State Level. Thursday, April 24, 1:00-2:00 ET. The National Academy of State Health Policy will present a webinar on the innovative medical-home efforts in Vermont and Philadelphia, and their impact on cost and quality outcomes. Register here.

Navigating Insurance Issues. April 30, 1:00 pm ET. This webinar will focus on how health insurance coverage for patients with rare diseases has undergone significant changes in recent years, including changes arising from the Affordable Care Act. Different types of health insurance and emerging trends in benefit design and affordability for individuals will be discussed, along with ways to determine how to evaluate plans to meet needs of rare disease patients or caregivers. Register here.


House Budget Resolution

You may have heard on the news that the House of Representatives approved, by a 219-205 vote, a budget resolution developed by House Budget Committee Chairman Paul Ryan (R-WI). Under this budget, Medicaid would be changed from an entitlement program to a block-grant program, like CHIP, through which each state gets only a set amount of money. It would also cut other important health and social services programs. But this budget resolution is symbolic only. Senate Budget Committee Chairman Patty Murray (D-WA) has announced that she will not propose a budget this year, as the Bipartisan Budget Act of 2013 negotiated by Murray and Ryan last year, has already set the spending levels for FY 2015.

6 by 15 Campaign

Senator Harkin (D-IA) recently announced the “6 by 15 Campaign” – a national effort to work on six national goals by the end of 2015, the year that marks the 25th anniversary of the Americans with Disabilities Act (ADA) and 40th anniversary of the Individuals with Disabilities Education Act (IDEA). Senator Harkin aims to have 6 million working-age adults with disabilities participating in the workforce by 2015. Additional goals involve community living, education, transition, healthy living, and early childhood. More information is available at http://sixbyfifteen.org and on Twitter at #6by15.

ACA NEWS and INFORMATION  [See below for ACA resources.] 

The Latest Numbers

Although the ACA’s open-enrollment period ended on March 31, the administration allowed people who had started the application process before that date to finish after the deadline. This extra time extended until April 15. It has been reported that about 400,000 people enrolled after March 31. Some state Exchanges were also providing a grace period. For a table showing the state Exchange extension policies, see


Still Ways to Help

Even though open enrollment for this year’s health plans has closed, there are still some things that advocates can do to help people use their coverage, keep their coverage, and/or prepare for next year’s open enrollment period, which begins on November 15, 2014, and ends on February 15, 2015. (The deadline for coverage beginning on January 1, 2015, is December 15, 2014.) 

Also, it is important for consumers to understand that:

  • they can enroll in Medicaid or CHIP at any time;
  • they may still  be able to purchase private insurance outside the Exchange/Marketplace;
  • there are special circumstances that will allow them to enroll after the deadline;
  • their eligibility for a premium subsidy or cost-sharing reduction may change if their income or family composition changes throughout the year;
  • they are required to notify their Exchange/Marketplace if their income, family composition, or certain other circumstances arise during the year.
  • they can appeal Exchange/Marketplace and Medicaid/CHIP decisions about qualifying for special enrollment, subsidies or eligibility for coverage (appeal forms can be found at https://www.healthcare.gov/can-i-appeal-a-marketplace-decision/);
  • they can appeal insurance plan decisions; and
  • they can apply for an exemption from the requirement to have insurance.


Family Support as a Research Priority

In a recent Federal Register Notice, the Assistant Secretary for Special Education and Rehabilitative Services proposed that family support be a priority for the Rehabilitation Research and Training Center (RRTC) Program administered by the National Institute on Disability and Rehabilitation Research (NIDRR). Per the Federal Register Notice, “We take this action to focus research attention on an area of national need. We intend the priority to contribute to improved outcomes in this area for individuals with disabilities and family members who provide assistance to them.” 

Individuals can comment on this notice at https://www.federalregister.gov/articles/2014/03/24/2014-06232/proposed-priority-national-institute-on-disability-and-rehabilitation-research-rehabilitation. The deadline for comments is April 23, 2014.


National Disability Navigator Resource Collaborative Resources

The National Disability Navigator Resource Collaborative (NDNRC) Guide to Disability for Healthcare Insurance Marketplace Navigators  provides information to help those assisting people with disabilities to select the most appropriate health plan and navigate the new health insurance landscape. The NDNRC has released a new summary fact sheet, “The Streamlined Marketplace Application Process.” The entire list of fact sheets (along with upcoming fact sheets) is available here.

In addition, the NDNRC website provides state specific resources with contact information for the state assistive technology program and local chapters of the NDNRC partner organizations: the National Alliance on Mental Illness, the National Multiple Sclerosis Society, and The Arc.


Disaster Preparedness

The Department of Health and Human Services (HHS) has announced America’s first PrepareAthon! National Day of Action, to take place on April 30. The PrepareAthon is a new campaign to increase every community’s ability to withstand disasters. To learn more about how organizations can play visit www.ready.gov/prepare.

Home and Community-Based Services

Now available is a new set of answers to frequently asked questions regarding the new requirements in the recently published home and community-based services final regulations.

For more information about Medicaid home and community-based services, see http://www.medicaid.gov/hcbs.

Health Literacy

The Institute of Medicine has a webpage offering numerous resources about health care literacy.

ACA’s Impact on Medicaid Coverage for People with Disabilities

The Kaiser Family Foundation has released an issue brief on how the ACA affects Medicaid eligibility, enrollment and benefits for people with disabilities.

And, as always, please feel free to contact us with any questions.


Yours truly,




Janis Guerney, Esq.


Brooke Lehmann, MSW, Esq.


Lynda Honberg