Upcoming Webinar!
How Parents' Social Security Benefits Impact Their Adult Child with IDD
With Connor Griffin, Director of Health Care Advocacy
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Thursday, September 25th, 2025
1:00pm - 2:00pm
Are you a parent contemplating retirement? Will you soon be collecting your Social Security retirement benefits? Join Connor Griffin, The Arc of New Jersey's Director of Health Care Advocacy, for a webinar that will discuss how parents retiring and collecting their Social Security benefits affects their adult child with intellectual and developmental disabilities (IDD)!
This webinar will cover:
- How your adult child's Social Security benefits will change
- What is a Section 1634 DAC?
- Keeping your child enrolled on Medicaid and eligible for DDD services
- How your adult child becomes eligible for Medicare
| | Taking Care of Your Sexual Health with a Disability | |
Brandeis University is seeking teens, young adults with disabilities, and parents and caregivers to be interviewed
Are you a young person with a disability?
Brandeis University is doing a research study about the things that young people with disabilities think are important for their sexual health. The researchers also want to learn about the things that make it difficult or easy for people to get sexual health services. The research team will use what they learn in the interviews to make a website which will teach teens and young adults with disabilities about taking good care of their sexual health.
You can do an interview if:
- You have a disability, medical diagnosis, or chronic illness that impacts your day-to-day life.
- You are between 15 and 25 years old.
- You were born in the United States and you still live in the United States.
- You speak English, Spanish, or sign using American Sign Language.
Contact the research team if you want to do an interview.
Call: 781-736-3928
Email: YouthStudy@Brandeis.edu
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Sensory-Friendly Emergency Care and Lab Services: Enhancing Care for Patients with Disabilities
Tuesday, September 16
12:00 - 1:00 PM EST
Emergency medical care can be overwhelming for anyone—but for individuals with autism, sensory sensitivities, or other developmental disabilities, it can be especially distressing. In this webinar, staff from Shore Medical Center will share how they’ve transformed their emergency department and lab to be more inclusive and sensory-friendly for pediatric and adult patients. You’ll learn:
- Why and how they implemented these changes
- What sensory-friendly accommodations look like in practice
- The impact on patient experience and outcomes
- Training opportunities for EMTs and medical staff
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Whether you're an individual, family member, or healthcare professional, this webinar will explore how small, meaningful changes can lead to more compassionate and accessible emergency care and lab services.
This webinar is being hosted by: The Rutgers Community Living Education Project (CLEP)
| | Are you Passionate about Health Care for Adults with IDD? | |
The Vanderbilt Kennedy Center is conducting a project called "Boosting the Use of the IDD Toolkit to Enhance Health Outcomes for Adults with IDD," focused on understanding the barriers to using the IDD Toolkit and finding strategies to increase its use by primary care providers. The IDD Toolkit is a website that provides information for the primary care of adults with IDD. The Toolkit offers health care providers best-practice tools and information regarding specific medical and mental and behavioral health concerns, including resources for patients and families.
The Center is interested in learning what primary care providers think of the IDD Toolkit tools and resources and understanding strategies that could increase the use of the tools in caring for patients with IDD. They are looking for participants to discuss the IDD Toolkit tools and resources. If you choose to participate in this study, you will complete a brief survey and attend a 60-minute focus group. You will receive a $50 Amazon gift card upon completion of the survey and focus group.
For more information and how to participate, click here.
Questions? Email iddtoolkit@vumc.org
| | Trump Administration Poised to Cut SSI Benefits for Nearly 400,000 Low-Income Disabled and Older People | |
The Trump Administration is preparing to propose a rule to cut Supplemental Security Income (SSI) benefits and strip eligibility for hundreds of thousands of low-income older people and severely disabled adults and children.
Under the rule, nearly 400,000 SSI beneficiaries living with family or friends experiencing their own financial struggles likely would have their benefits cut — typically by hundreds of dollars per month — or lose eligibility altogether.
At the same time, the rule would make it harder for eligible people to get and keep SSI, creating new red tape for beneficiaries and more work for the Social Security Administration’s (SSA) already depleted and overburdened staff.
Read the full article.
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Women's Health & Down Syndrome
The Nation Down Syndrome Society (NDSS) created a Women’s Health & Down Syndrome webpage covering topics such as preparing for gynecological visits, menopause, and additional feminine considerations. Click this link for helpful resources, printable PDFs, and more information covering various topics supporting a woman’s overall health.
Also, see the guide entitled Women's Health and What Every Woman Should Know, produced by the Rowan RISN Center, which provides guidance designed to be accessible to people with IDD and is useful for every person requiring women's health care.
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September is World Alzheimer’s Month
World Alzheimer’s Month takes place throughout September each year, and aims to unite people globally to raise awareness about Alzheimer’s disease and other forms of dementia. The campaign encourages individuals, organizations, and communities to participate in various activities to promote understanding and support for those affected by these conditions. Raise awareness, challenge the stigma, and promote support!
| | Click the flyer for more info: | |
UPDATES ON BIOMARKERS, THERAPEUTICS, BIOETHICS & DEMENTIA: CONTINUING THE CONVERSATION FOR PEOPLE WITH DOWN SYNDROME
September 30, 2025
5:00 – 6:30 pm ET
- Research on biomarkers and anti-amyloid treatments has advanced rapidly since the last NTG webinar in 2021. This updated panel will share the latest findings, practical applications, and ethical considerations across the lifespan for people with Down syndrome who may face Alzheimer’s disease. With perspectives from clinicians, researchers, and a bioethicist, the discussion will offer clear guidance for decision-making and care. This session is designed for clinicians, families, providers, advocates, and all who are committed to improving the future of individuals with Down syndrome.
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Continuing Education Credit Available: Participants who attend the full duration of this online webinar and complete the required evaluation will be eligible to receive 1.0 American Academy of Family Physicians (AAFP) credits. CEs will be awarded upon successful completion of all participation requirements.
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Keeping Up-to-Date by Catching Up with Connor!
Live on Facebook every other Thursday at 2:30pm, this series features 10-15 minute educational presentations on specific health care issues, news, and key topics for individuals with IDD and their families.
No registration is required, but please leave a like and comment what topics you would like to see!
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Social Security Transitioning to Electronic Payments
Beginning September 30th, 2025, the Social Security Administration will no longer provide paper checks for benefits payments. This transition only affects a small number of Social Security beneficiaries who still receive their monthly payments by paper check.
For beneficiaries receiving paper checks, you are encouraged to enroll in direct deposit or opt for the Direct Express® card to continue receiving your monthly benefits timely. Read the full article.
| | NJ Disability Information Hub | |
Many services for individuals with disabilities are offered by the state and various other organizations. The NJ Disability Information Hub brings together these resources into one place for NJ residents with disabilities, caregivers, parents, and advocates.
Families can find information on available food, income, or employment assistance programs; caregivers can find information on support programs and services to assist in caring for their loved ones; and individuals with disabilities can find information on various services, including in-home supports, vocational rehabilitation, personal care assistance, and education.
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The Catastrophic Illness in Children Relief Fund (CICRF) is a financial assistance program for New Jersey families whose children have an illness or condition otherwise uncovered by insurance, State or Federal programs, or other sources, such as fundraising.
The Fund is intended to assist in preserving a family's ability to cope with the responsibilities which accompany a child's significant health problems.
Any child, any condition, any income.
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Virtual Office Hours
The Health Care Advocacy Program offers virtual office hours on Mondays from 1:00pm to 3:00pm.
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Meet with the Director of Health Care Advocacy to discuss healthcare questions or concerns, for example, regarding Medicaid, Medicare, or Social Security, as they affect your family member or loved one with IDD.
Appointment slots are offered on a first-come, first-served basis and may be limited to 20 minutes, as needed, to accommodate more people.
Sign up here!
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