Advocacy

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.   

MSSN Attends the 42nd Annual Legislative Reception at the State House

This year’s reception at the Massachusetts State House recognized the importance of ending bias and stigma against people with I/DD that are barriers to their employment, independence, and equality, and the ways in which these biases are also reflected in the treatment of their direct support providers. This event was hosted by The Arc of Massachusetts and the Massachusetts Developmental Disabilities Council. The MSSN was a proud co-sponsor of the event and was glad to be in attendance!

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Mental Health Trainee Facilitation of Sibling Support Groups: Understanding its Influence on Views and Skills of Family-Centered Care

Facilitating a sibling support group may be an effective way for mental health trainees to gain skills and confidence in delivering family-centered care. Mental health training programs aiming to imbue trainees with the importance of family-centered care may consider creating opportunities for trainees to facilitate sibling support groups.

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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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State of Siblings of People with Disabilities

The MSSN has produced a summary brief on current research trends that affect siblings of people with disabilities. Please read State of Siblings of People with Disabilities to learn how research in the field informs the work of the Massachusetts Sibling Support Network

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Points of Consideration for Families with Typically Developing Children and Children with Disabilities

 

In this post, we revisit and share a video from Susan Cauley’s cable access show Your Disability Connection. MSSN Board Member, Cynthia Haddad, CPA, and a colleague from the Federation for Children with Special Needs (FCSN) explore how parents can provide an atmosphere of support and love for siblings of people with disabilities.

Speaking on sibling panel
“A Dialogue with Siblings: ‘Their Story’ of building bridges, strengthening bonds, and advancing community relationships.”

 

MSSN Executive Director, Emily Rubin, and Board Co-President, Hillary Dunn Stansiz, participated in the Cooperative for Human Services’ event in honor of National Sibling Day. Emily moderated the panel discussion about sibling experiences, challenges, and opportunities to connect individuals with disabilities to our communities.

2019 Annual Legislative Reception at the State House
41st Annual Legislative Reception

 

The MSSN was honored to co-sponsor the 41st Annual Legislative Reception on March 6, 2019 at the State House! The Arc of Massachusetts and the Massachusetts Developmental Disabilities Council hosted this inspiring event. People with ​disabilities, family members, advocates, state agency heads and their staff, and legislators gathered to discuss legislative priorities.

The MSSN shared information about sibling issues, made great connections and participated in meaningful conversations. Thanks to everyone who participated!

Click here for more information about this inspiring day!

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