~ Winter 2018/19 Edition ~
  • Update on New Jersey's Dual Eligible Special Needs Plans (D-SNPs)
  • Transition of Health Care - Building a Bridge from Pediatrics to Adulthood
  • Down Syndrome and Alzheimer's Disease: New Support Group for Families & Caregivers
  • A Personal Perspective on Down Syndrome and Alzheimer's Disease
  • Youtube Video from the National Down Syndrome Society
  • How to Continue a Parent's Health Insurance when a Child with I/DD is Approaching Age 26
  • "What is a Non-DAC?" Factsheet Update
  • Social Security Administration Issues a SCAM ALERT
  • The Arc of New Jersey's 30th Annual Conference on Medical Care, May 31, 2019 - Save the Date!
Update on New Jersey's Dual Eligible
Special Needs Plans (D-SNPs)

Last year, The Arc of New Jersey distributed three sets of  Frequently Asked Questions (FAQs) on Dual Eligibles: Understanding what happens when a person with I/DD who receives Medicaid becomes eligible for Medicare.   The Arc of New Jersey has updated the FAQs on Dual Eligible Special Needs Plans (D-SNPS). A D-SNP is a  Medicare  managed care plan, specifically for individuals who receive both Medicare and Medicaid.

It has come to our attention that there may be some confusion regarding the voluntary nature of D-SNP enrollment. Therefore,  it is important for families and staff to understand that enrollment into a D-SNP continues to be voluntary and is not required.  If anyone informs you that a D-SNP enrollment is required, please email Beverly Roberts at The Arc of New Jersey ( broberts@arcnj.org ) so that we can facilitate the correction of the misinformation.  

The Arc of New Jersey's D-SNP FAQs were updated because of a change that became effective on January 1, 2019, authorized by the federal Centers for Medicare and Medicaid Services (CMS). This change pertains to the process to be followed if a dual eligible who has enrolled in a D-SNP wants to disenroll.  See FAQ #3 for the new information on D-SNP disenrollment.

Transition of Health Care for Individuals with Intellectual & Developmental Disabilities:
Building a Bridge from Pediatrics to Adulthood
Alyssa Siegel, MD

Over the last several years, there has been a surge of interest in the phase of life that we now call the transition to adulthood, a period that has been defined as “moving from the protected life of a child to the autonomous and independent life of an adult.” The pediatric community has increasingly recognized that typical teens and young adults are unprepared to enter the adult health care system and to manage their own health care needs. For those with intellectual or developmental disabilities, families face even greater challenges as they strive to achieve the highest level of independence for their loved one, continue to provide the same protection that was required throughout childhood, and navigate systems of care that are not prepared to offer comparable supports found in the pediatric world.

Down Syndrome and Alzheimer’s Disease:
New Support Group for Families and Caregivers
Jane Boyle
Leone Murphy, RN, APN is an advanced practice nurse whose career has been devoted to healthcare for the special needs community. She is also the proud mother of Michele, a woman with Down syndrome . Leone is the Chair of The Arc of New Jersey’s Mainstreaming Medical Care Program.  Jane Boyle is a surviving sibling and family caregiver.  Together, they have launched the New Jersey Down Syndrome & Alzheimer’s Family Support Group.  The Asbury Park Press recently featured a front page story about their plans and can be found here .

Leone and Jane met when Jane’s sister Ellen was at the early stages of Alzheimer’s Disease.   Both participated in The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) National Family Support Group — Leone as a professional who shared information and insights on Down syndrome and Alzheimer’s Disease, and Jane as a family member looking to support her sister.  Through monthly online meetings, families across the country found support for their difficult journeys.

Down Syndrome and Alzheimer’s Disease: 
A Personal Perspective 
Jane Boyle

My sister Ellen’s amazing life spanned 52 years.   She lived at home and was a beloved member of her community. She graduated from high school at 21, worked for 20 years, and then attended adult day programs. A Special Olympian for 30+ years, she won countless medals in bowling, swimming, and other sports. She had an enviable social life and circle of friends and admirers. The list goes on. 

At age 50 she was diagnosed with Alzheimer’s Disease.   

When Ellen was born in 1965, doctors said her life expectancy would be about 20-25 years. Medical advances have dramatically increased life expectancy for persons with Down syndrome (DS) and many now live into their 60s and even 70s.  For many with DS, aging brings new challenges including a high risk for Alzheimer’s Disease.

Youtube video from the
National Down Syndrome Society: 

No limitations on what individuals with
Down syndrome can achieve!

This video, from the National Down Syndrome Society, provides a short but powerful message denouncing decades-old beliefs of doctors and other health care professionals who stated -- erroneously -- that individuals with Down syndrome were destined to have lives with severe limitations. The voices of individuals with Down syndrome in this video are strong and proud in contradicting those antiquated opinions. The message of this video is clear: No limitations on what individuals with Down syndrome can achieve!

How to continue a parent's private group health insurance when a child with I/DD is approaching age 26

There are  no changes  to the long-standing policy allowing young adults with intellectual and developmental disabilities (I/DD) who are approaching age 26 to remain on their parent's private group health insurance. This fact sheet is included in our newsletter as a reminder to families and to staff who are in a position to let parents know about this important benefit. The forms to request continuation of a young adult with I/DD on the parents private group health insurance must be completed  before the child's 26th birthday

The Arc of New Jersey's fact sheet titled, 
"What is a Non-DAC?" has been updated

A year ago, The Arc of New Jersey's Mainstreaming Medical Care Program distributed a fact sheet titled,  What is a Non-DAC? How does "Non-DAC" status allow some students with intellectual and developmental disabilities (I/DD) who are not eligible for Medicaid, to receive DDD services?    That fact sheet has been updated with the 2019 income eligibility numbers. Please see the updated fact sheet, and share it with others who may also be interested in this information.

Social Security Administration issues a
The Social Security Administration wants everyone to be aware of fraudulent phone calls from individuals who say they represent Social Security. Some of the fraudulent callers use threatening language, while other callers say they want to help the individual to activate benefits.  

The Social Security Administration is alerting you not to engage with such callers, and to report any suspicious calls to Social Security’s Office of the Inspector General by calling 1-800-269-0271 or  submitting a report on the OIG website .

Click here to see the full text of the Scam Alert message from the Social Security Administration.

Healthy Times  is a publication of
Mainstreaming Medical Care, a program of 
The Arc of New Jersey funded by the New Jersey
Division of Developmental Disabilities. 

Thomas Baffuto
Executive Director, The Arc of New Jersey
Joanne Bergin
President, The Arc of New Jersey
Beverly Roberts
Director, Mainstreaming Medical Care; Editor
Jennifer Lynch
Administrative Assistant, Mainstreaming Medical Care; Graphic Designer

Mainstreaming Medical Care Advisory Board Members:
Steven Cook; Barbara Coppens; Kristen Creed; Lucille Esralew, Ph.D.; Theodor Feigelman, M.D.; Carly Heaton, DO; Seth Keller, M.D.; Robert Like, M.D., MS; Leone Murphy, RN, MS, CS, Chair; John Nevins, DO; Emily Ott, RN, BSN; Stephanie Pratico; Andrea Quinn, Psy.D.; Elizabeth Shea, Esq.; Deborah Spitalnik, Ph.D.; Evan Spivack, DDS; Margaret Springer, RN, MSN, APN; Kevin Walsh, Ph.D.; Kellie Woodruff; Leah Ziskin, M.D.

Healthy Times newsletter is intended for informational purposes only, and does not provide or claim to provide advice regarding diagnosis or treatment for any individual case. 
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