ACHIEVA and HealthMeet

 Your Health Matters

Volume 3 Issue 1                                                                                 January 2014 Edition




In This Issue
Getting Back on Track
Pediatric to Adult Healthcare
Affordable Care Act Update
Learn About Health Concerns
On-Line Training for Physicians
Autistic Community
Well Being of Family Caregivers
Understanding Behavioral Changes
Healthcare Transition for Youth
Refractory Seizure Evaluation
Improving Seizure Outcomes
Tobacco Cessation for Individuals with Disabilities
HealthMeet Calendar of Events

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Getting Back on Track to Better Health

From Melissa Allen, ACHIEVA Disability Healthcare Initiative Manager


When we start an exercise program, it's normal to get off track and stop the program.  We need to make a focused effort to get back on track so we can begin exercising again.  Here are six simple rules to stay on track.


The One-Minute rule: If you don't feel like exercising, put your shoes on and exercise for at least one minute.  You'll probably be able to continue for 30 minutes and feel great.


The Stop Rule: Stop exercising if you have any chest tightness or chest pain, severe shortness of breath, or feel dizzy, faint or sick to your stomach.


The Wrench Rule: If you have muscle pain or cramping during exercise, stop that exercise.  Relax the muscle by rubbing it gently with your hands.  Start exercising, again, with slower and easier movements.


The Talk Test:  If you can carry on a conversation while doing your exercises, you are probably working at a safe level.  If not, slow down a bit.


The Two-Hour Pain Rule: If your exercises cause pain that continues two hours after exercising, don't do as many as you were doing and don't do them as strong.


My Body, My Friend Rule: Exercises that seem easy one day may be too hard the next.  When this happens cut back on the number of times that you do the exercise and then return to the normal amount when you can.


Information taken from Health Matters: The Exercise and Nutrition Health Education Curriculum for People with Developmental Disabilities.

Healthcare Transition: Moving from Pediatric to Adult Health

Transitioning from pediatric health care physicians, the adult medical system can be overwhelming when you have special health care needs and a strong relationship with your healthcare team. Ideally, the transition discussion begins several years before you need to be in the adult healthcare system.  As families and physicians look more closely at this issue, here is a webinar that discusses this transition from the doctors point of view.

Alda Maria Gonzaga, MD, MS and Reed Van Deusen, MD, MS, University of Pittsburgh Medical Center in Pennsylvania discuss the process of transferring to adult oriented health care. Transferring to adult health care is a process and this webinar focuses on the beginning stages of that transition process.  This short webinar will also discuss what to expect at the first adult medical visit and what to bring with you. 

Click here to view the webinar. 

Affordable Care Act Update

Since the launch of the Health Insurance Marketplace, the Department of Health and Human Services has taken many steps to improve the consumer experience of and strengthen enrollment channels for consumers seeking quality, affordable health coverage.  Get help enrolling online, on the phone, or in person.  You can get help where and when you need it. For example: You can start an application online and then call 1-800-318-2596 (TTY: 1 855-889-4325) 24 hours a day, 7 days a week to get help enrolling over the phone.  You can also find in -person help from certified assistant's in your area.  Just enter your zip code to get started.


You can apply offline and continue your enrollment online. If you submitted a paper application or applied over the phone, you can create a Marketplace account to pull up your eligibility determination and complete your enrollment.  To do this, you will need your application identification number and you can contact the call center to get it if you don't know it.


For direct enrollment in a Marketplace plan, many insurers are now offering the opportunity for you to enroll directly in a Marketplace plan with that company, whether through the insurance company's website, an agent or broker, or an online health insurance seller.


The Marketplace Open Enrollment period runs until March 31, 2014.  Here are some shopping tips to get you started.


Questions or Concerns? Contact

Help Us Learn More About Health Concerns for People with ID

New Online Assessment Tool Seeks Caregiver's Perspective


The Arc of the United States is seeking caregiver views of the health status of the people with intellectual disability (ID) they support.  If you or someone you know is a professional, paid, unpaid or family member caregiver of someone with ID, we invite you to take a short, confidential online assessment to help us collect valuable information about caregiver views of the health status of people with ID.


In exchange, you can use the assessment as a tool to help you evaluate any "red flag" health concerns you may have about the people for whom you provide care.  While this checklist should not be used in the place of seeing a doctor, it can be a handy way to identify concerns.


The information you provide as part of the assessment will be used to find out more about the role of caregivers and the health concerns that impact people with ID across the United States to help develop appropriate and accessible tools for all caregivers to use in the future to help promote the health of people with ID.


By participating in this assessment, you give The Arc permission to use this information to help better understand and evaluate health issues impacting people with intellectual disability and their caregivers.  The information provided is confidential and will never be used to identify individuals.  However, you will have the opportunity to provide contact information if you choose so we may send you information about The Arc and its health promotion programs.


Questions?  Please contact Jennifer Sladen at  Or find out more about The Arc, our HealthMeet project and our work to serve people with ID and their families at


The HealthMeet health and education initiative is funded by the Centers for Disease Control and Prevention (Grant #5U59DD000993-2).  Through free health assessments, health training for people with I/DD, their families and caregivers, and professional training, this initiative aims to help identify and reduce health disparities among people with intellectual and developmental disabilities.

On-Line Training Series Supports Physicians

The Florida Developmental Disabilities Council and the American Academy of Developmental Medicine and Dentistry are proud to offer a free, 12 credit-hour webinar series for physicians.  This webinar series covers topics such as best practices in the care of adults with developmental disabilities, strategies for addressing the psychological and support needs of adults with special health care needs, practical strategies for providing care in medical offices and facilities, and effective billing and reimbursement practices.  The series is designed to enhance the practice skill of primary care physicians and residents who would like to provide better care to their adult patients with developmental disabilities.

Each webinar is accredited by the American Academy of Family Physicians for 1.0 hours of prescribed credit (recognized by the AMA as equivalent to Category 1 credit).  A total of up to 12.0 credit hours are available to those who participate in all of the webinars which are free and online at:

For more information, contact Holly Hohmeister at 1-800-580-7801 or

Resource Welcomes You to the Autistic Community

A new handbook, produced by the Autistic Self Advocacy Network with support from the Autism NOW Center, offers an introduction to the autistic community and is a valuable resource for newly-diagnosed individuals with autism spectrum disorders (ASD).  It addresses the most common questions that people may have about their new diagnosis and examines differences and similarities between people with ASD and people without ASD. 


The booklet is available at two reading levels: Adolescent (intended for those at or around a 6th grade reading level) and Adult.  Find out more at The Autism NOW Center.

Concerns About the Well Being of Employed Family Caregivers

A new report from the United Hospital Fund and AARP Public Policy Institute shows that employed family caregivers juggle multiple responsibilities while struggling with stress.  Despite workplace obligations, employed family caregivers perform a range of medical/nursing tasks including medication management, wound care, using meters and monitors, and more-raising concerns about their level of stress and need for support.

The report, Employed Family Caregivers Providing Complex Chronic Care, highlights an urgent need for employers to recognize that their employees who are family caregivers are managing complex responsibilities both at home and on the job.


Click here for the report.

Understanding Behavioral Changes in Adults with I/DD and Dementia

Tuesday, January 7, 2014 

2 - 3 p.m. EST


Dr. Kathleen Bishop:

  •  PI on the Program on Aging and IDD at Finger Lakes Geriatric Education Center, University of Rochester Medical Center
  • Clinical Senior Instructor - Department of Medicine, Geriatrics/Aging (SMD) at University of Rochester Medical Center
  • Published many online journals and articles and her research interests include environmental assessment as persons with disability age and Health Care for women with disabilities. 
  • Kathleen received her undergrad degree from SUNY at Geneseo and her Masters and Ph.D. from Syracuse University

Ms. Kathleen Pears, MPPM:

  • Founder and CEO of Dementia Care Strategies. 
  • Former Director of Education and Public Policy for the Alzheimer's Association, Maine Chapter
  • Co-chair of the National Task Group on Intellectual Disabilities and Dementia Practice's
  • Extensive experience developing and implementing training programs for families and caregivers on the topic of dementia care
  • Kathryn earned her Master's degree in Public Policy and Management and an Executive Certificate in Health Care Policy from the Muskie School of Public Service.

This webinar will dive into the behavioral aspects of dementia in persons with I/DD going into detail regarding symptoms and behaviors associated with dementia in this population, and how sensory challenges can often be misinterpreted and associated with dementia.  Environmental factors that can contribute to certain behaviors will be introduced as well as changes that you can make in an individual's environment that will help to reduce specific attributes as well. 


Register here.

Healthcare Transition for Youth with I/DD:

A Review of Research, Policy and Next Steps

Tuesday, January 21, 2014 

2 - 3 p.m. EST

Presenter: Samantha Crane, ASAN's Director of Public Policy

In December 2013, the Autistic Self Advocacy Network (ASAN) released a policy brief on addressing the health care needs of youth with autism and other developmental disabilities as they transition to adulthood.

Join us for this upcoming webinar to learn more as Samantha Crane, ASAN's Director of Public Policy, discusses concepts from the brief. She will also provide recommendations to ensure that young adults with Intellectual and Developmental Disabilities (I/DD) receive consistent access to quality health care, as well as support in taking on adult levels of autonomy with respect to their own health care needs.

Register here.

Refractory Seizure Evaluation & Treatment in Adults with I/DD

Wednesday, January 22, 2014

2 - 3 p.m. EST

Presenter: Seth Keller, MD 


Adults with intellectual and developmental disabilities (I/DD) often have complex and fragile medical difficulties including seizure disorders.  Commonly, seizures are refractory to medication therapy and usage of multiple seizure medications, toxicities, emergency room visits and associated injuries may occur.  The presentation will review these various challenges as well as the difficulties that also contribute to problems with diagnosis, testing, and therapies.  Recommendations will be made to help ensure that better outcomes are achieved as well as improvements in quality of life.  


Register here.

Improving Seizure Outcomes Through Online Seizure Diaries

Wednesday, January 29, 2014

2 - 3 p.m. EST

Presenter: Rob Moss, the Co-Founder of is an innovative website dedicated to help individuals that have frequent seizures and epilepsy to understand the relationship between their seizures, medications/dosages and daily variables to help reduce seizure activity and understand the triggers.  Rob Moss, the Co-Founder of will share some of the tools and personalized reports the system can generate to help empower patients about their medical needs.  These reports can then be shared with your doctors to help them better understand and search for answers to your specific situation to improve daily living.


Register here.


Tobacco Cessation for Individuals with Disabilities

Wednesday, February 19, 2014

2 - 3 p.m. EST

Presenter: Candice Lee - Michigan Department of Community Health 


Smoking is bad for your health.  It's a fact we have all known for a long time now, so why are so many of us still doing it?  In this webinar, Candice Lee from the Michigan Department of Community Health will reveal the prevalence and patterns of tobacco use in individuals with IDD. She will show the impact that tobacco use can have on your health, finances and other implications it can lead to.  Tobacco cessation resources for individuals with IDD and ways to effectively communicate the important message for the need to quit smoking will be given.


Register here.

            HealthMeetCalendar of Events

Please see our HealthMeetŪ Events page for a full calendar of all upcoming events at:

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Nancy Murray
President, The Arc of Greater Pittsburgh
serving Allegheny, Beaver and Westmoreland Counties
(412) 995-5000 x424