Sibling Support

Massachusetts General Hospital Supporting the Disability Community During COVID-19

By Sarah Davidson

COVID-19 has disproportionately impacted people living with disabilities and their families. Many families and siblings with brothers/sisters with disabilities have had to adapt to a completely new health care system. While the health care system is focused on COVID-19 right now, many brothers/sisters with disabilities continue to need routine care from the health care system during these unprecedented times. During the pandemic, doctors have attempted to limit in-person contact while still meeting the needs of their patients by utilizing telehealth appointments and reducing caregivers’ attendance at appointments. The new changes both online and in-person have presented new challenges within the disabled community. 

In December 2020, Massachusetts General Hospital (“Mass General”) released a mission statement to ensure that their patients with disabilities receive the care they deserve. Mass General wants to ensure that all health care providers are knowledgeable about resources available for their patients with disabilities and their families. Mass General has many accommodations that can be requested in the health care setting to support individuals with disabilities and their families. For communication needs, individuals can request that staff wear clear masks, an American Sign Language (ASL) interpreter be present, or be given hearing enhancers. While it is important to reduce the amount of social contact, before an appointment brothers/sisters with disabilities can request to bring an additional support person. Mass General has also created a health care system through a virtual environment. To support those with disabilities, the virtual environment provides real-time ASL interpreters, a support person, and virtual text to be compatible with screen readers. 

Along with increasing accessibility for brothers/sisters during COVID-19, Mass General is also trying to identify barriers in the disability community and address them through the development of policies, guidelines, and many COVID-19 resources for both patients with disabilities and their families. Mass General is trying to build a better system to support people with disabilities by:

Adopting an inclusive, human-centered design: Approaching a problem with the disability community in mind and creating new solutions to support them. 

Collecting disability data: Including people with disabilities in studies, clinical trials, and data collection to ensure an accurate representation of the disabled community.  

Developing training programs for health care professionals: Aligning program with the specific care and rights of people with disabilities, while also addressing the societal stigma that creates additional barriers for people with disabilities. 

For more information on Massachusetts General Hospital’s COVID-19 policies to support the disability community:

https://www.massgeneral.org/news/coronavirus/Covid-19s-impact-on-people-with-disabilities

For further information contact your health care provider.  

How Does COVID-19 Affect Siblings and Families?

By Sarah Davidson

During the pandemic, siblings and families have had to face completely new challenges and experiences while also worrying about the health and well-being of their brothers/sisters in these uncertain times. Families with brothers/sisters with disabilities have had to adapt to their new normal and the challenges of social distancing. Due to COVID-19, many brothers/sisters with disabilities have lost their daily routines and access to in-person programming. Siblings are, in turn, providing key support to their brothers/sisters. It is important to discuss the experiences that siblings are encountering as they become a larger support system for their brothers/sisters and their families. 

In 2020, B.K. Redquest of the Siblings Collaborative explored the experiences of siblings of adults with intellectual/ developmental disabilities during the COVID-19 pandemic. Redquest used an online survey to explore sibling support and concerns during COVID-19. Redquest found that most siblings are worried about the health, well-being, and the disruptions of daily routines of their brothers/sisters during the pandemic. 

Although this is a new experience, many siblings in the study shared support systems that have been helpful for them during the pandemic. 

Self-care: Creating a self-care routine, including going for a walk, starting a new hobby, or identifying alone time. 

Strength from relationships: Discussing shared experiences with other siblings both inside and outside the household and utilizing technology to spend quality time with family and friends virtually. 

Support systems for brothers/sisters: understanding the importance of virtual programming for brothers/sisters, wearing a mask in the community to support their brothers/sisters, and utilizing open communication throughout the family. 

While COVID-19 has isolated many people, it is important to continue to create new memories and experiences that can bring a smile to the whole family, while also being conscious of the sibling’s increased role in the brother’s/sister’s routine.

During the COVID-19 pandemic, siblings are providing key support to brothers/sisters and it is important to include sibling’s mental wellness into the conversation. 

Here you can learn more about the study https://onlinelibrary.wiley.com/doi/10.1111/jir.12793

Redquest, B. K., et al. “Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID‐19 pandemic.” Journal of Intellectual Disability Research 65.1 (2021): 1-10.  https://doi.org/10.1111/jir.12793 

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.   

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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.

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.