siblings of people with disabilities

MSSN’s National Sibling Month 2nd Annual Photo Contest

Although in-person National Sibling Month activities were difficult in 2020, the MSSN spread joy and fun on social media with our 2nd Annual Photo Contest campaign.

Throughout April, we showcased photos of siblings and their brother/sister with a disability on social media. Our Board of Directors voted for 3 winners in the following categories: Funniest, Most Massachusetts & Most Expressive!

Congratulations to our winners! We look forward to future sibling events!

 

Advocate
The Urgent Need to Advocate for Brothers/Sisters with Disabilities During COVID-19

Siblings are an integral part of the lives and caregiving of our brothers/sisters with disabilities. We have watched the nation react quickly to the coronavirus pandemic. Congress has passed three bills to help mitigate issues for all citizens; however, as with any legislation that is quickly implemented with little historical precedent, there are gaping holes.

The current bills do not adequately address the needs of people with disabilities, including their families and siblings. People with disabilities are considerably more vulnerable and, as a result, are disproportionately affected. 

Join The Arc of the United States and ask Congress to pass a bill that directly addresses the specific needs of our community including: 

  • Paid leave for caregivers. As siblings who are often caregivers, paid leave is particularly essential. The Family Medical Leave Act (FMLA) should recognize ALL family members, including siblings, in the emergency paid leave provisions. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions, including adult siblings.  
  • Funding for a Medicaid grant program to support access to home and community-based services (to combat institutionalization) and to support the direct support professionals (DSP) workforce. Congress should pass the Coronavirus Relief for Seniors and People with Disabilities Act.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. Direct support professionals must be designated as essential workforce so that they have access to the PPE and medical supplies they need.
  • Help for people on Supplemental Security Income (SSI) to access recovery rebates. People with disabilities on SSI are being asked to file needless paperwork in order to access economic stimulus payments. Congress should tell Federal agencies to use their existing authority to share data and file for people on SSI.

Learn more about The Arc’s response here

Contact Congress here.   

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COVID-19: Being a sibling to a person with a disability Webinar

MSSN Board Member Shruti Tewani, LMHC explores the challenges facing siblings of individuals with disabilities during the COVID-19 epidemic and important considerations and self-care techniques. Follow along with the PowerPoint presentation available here.

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Supporting Siblings of Children with Disabilities at School

The following article by Emily Holl and Don Meyer of The Sibling Support Project highlight important considerations for teachers and other school personnel and suggestions for how to provide support and validation to siblings of people with disabilities in schools.

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“He Always Kisses and Hugs Me”

This beautiful and honest short video captures the challenges, wonders, and wide range of emotions that siblings of people with Angelman Syndrome experience. Moreover, it brings to light the important role of siblings and the transition to a caretaker role that some siblings assume as they age.

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Board Member Spotlight: Hillary Dunn Stanisz, Esq.

Meet Hillary Dunn Stanisz! She has served on the MSSN Board of Directors since 2013. Hillary has an older brother with Angelman Syndrome, and as a result of her experience, she has devoted her career to assisting individuals with disabilities and their families. As an attorney at the Disability Law Center, Inc., she represents individuals with disabilities in matters involving special education, abuse and neglect, and securing appropriate community supports and services from adult human service agencies.

Hillary also serves on the Steering Committee of The Arc of Massachusetts and as a Council Member on the Massachusetts Developmental Disabilities Council. In addition, she enjoys mentoring siblings in law school about careers in the disability arena.

5 Questions with Hillary:

1. What does the work of the MSSN mean to you?

The MSSN means many things to me, but two big ones are community and progress.

Community in that adult siblings like me don’t often have friends or networks – a community – of fellow adult siblings with similar experiences, victories, challenges and concerns. It can be lonely for us. I have met amazing adult siblings through the MSSN who are now friends and part of my network.  The MSSN has created, and continues to work to create, space for this “community” to grow for adult siblings.

Progress in that the MSSN is raising awareness about sibling experiences and issues across the life span and providing education to adult siblings on important future planning topics. After all, siblings most often have the longest relationship with their brother/sister with a disability. In the disability community, “family” or “family support” cannot continue to mean only “parent” or “parent support,” and the MSSN is leading the progress of changing this with service providers, state agencies, parents, and more.

2. How did you become involved with the MSSN?

Working in the disability community, I was aware of the start of the MSSN and knew one of the founders. Once I was a bit settled in my legal career, I began exploring volunteer opportunities and Boards that I felt I could help with and that would be meaningful for me. The MSSN was a natural fit.

3. What do you think is the biggest challenge that the MSSN faces?

Sustaining funding and building the organization from a financial standpoint.

4. What has been the MSSN’s biggest success?

The MSSN is a true grassroots organization – a volunteer board doing all the work itself. In a very short time, the MSSN, to the immense credit of Emily Rubin, has grown to have its first paid employee and be awarded a prestigious grant.

5. What mantra do you live by?

Work hard, family first, and never forget to laugh along the way.

For more information on the MSSN, contact us here.

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MSSN Receives Major Grant Award

Today the Becker Family Trust and The Arc of Massachusetts announced major grants awarded for innovative, high impact projects benefiting individuals with intellectual and developmental disabilities for social inclusion, self-determination, employment, assistive technology and supported living. The Massachusetts Sibling Support Network is honored to receive a $100,000 grant award! We look forward to growing our organization and providing support to siblings of people with disabilities. Thank you!

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