The Sibling Voice

The Sibling Voice
The Sibling Voice

By Cynthia Haddad, CFP®

It’s important to remember that there is no right or wrong role for a sibling to play within a family and that it often changes over time. From an early age, siblings need the chance to voice their own ideas about the roles they want within the family, whether they want to be playmates, confidantes, caregivers, or none of the above. Discussion — and lots of it — is key. 

Involving siblings in proactive planning has benefits for siblings, parents, and the rest of the family, particularly as siblings reach high school age. An important effect of discussions at this point in time is that it may alleviate concerns about future residential and work arrangements when parents are no longer able to provide care. 

Here are some suggestions on how to structure meetings and potential discussion points:

Create a plan – it may or may not be a written document but everyone should have a say in it and agree to it.

– It can be a Financial Plan, an Estate Plan, a Person Centered Plan, a Life Care Plan, or an informal statement of the vision that the family understands.

– Encourage the use of a Letter of Intent– which is not a legal document, but provides all of the important information about the child’s life, the government benefits and services, the people, the routines, the likes and dislikes, and other helpful information that mostly only a parent knows. This is good to have in one document for future caregivers and siblings. Of course, it should be updated with any important changes or at least annually.

Identify each person’s goal/interest in involvement.

Begin planning discussions early (high school or before). But it is never too late.

If the plan includes the transition of primary guardianship to the sibling, it must also include all the steps necessary to ensure that transition is successful.

Make it a working plan that can be changed – siblings should feel like they can change their mind.

While proactive planning outcomes for siblings are underexplored in research, anecdotal evidence strongly suggests that siblings benefit from learning about options when parents transition their support role to other family members.  

You can learn more about Cindy and her practice by visiting https://affiniafg.com/our-team/cynthia-haddad/.

How Does Disability Affect Siblings?

No Sibling Left Behind, one of the MSSN’s signature presentations, covers a wide range of useful and practical information that pertains to siblings of individuals with disabilities. The presentation addresses what it’s like for siblings to grow up with a brother/sister with disabilities, strategies to support siblings, and diverse research findings on sibs.

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.   

Massachusetts Sibling Support Network Logo
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.

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!

LABBB Podcast Interview with Emily Rubin, MSSN Executive Director

Patric Barbieri of LABBB recently interviewed MSSN Executive Director Emily Rubin about the importance of special needs planning and the integral part that siblings play in the process. Emily shares her research on sibling support groups and her perspective and knowledge on this subject is profound. This is a must-listen for families and siblings.

Listen to the podcast here!

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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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