Advocacy

Let’s Talk About Self-Advocacy

By Sarah Davidson

Advocacy is a crucial part of supporting one’s brothers/sisters through the health care and educational systems, social interactions, and everyday life. Working with your brothers/sisters on self-advocacy skills and practices can support them to find their voice while working with many complex systems. Self-advocates exercise their rights as citizens by representing themselves and others. Changing the system to ensure the inclusion of individuals with disabilities is important and as a society, we have to evaluate if the people being supported are incorporated into the conversation. Policies put in place must include self-advocates to evaluate the practicality of the policies. For students, self-advocacy is a vital part of the educational system to ensure that they are receiving the accommodations they need and deserve.

Resources to support your brother/sister with self-advocacy skills: 

Self-Advocates Becoming Empowered (“SABE”): 

SABE is a national organization working to ensure people with disabilities are treated as equals. SABE offers a Self Advocacy Resource and Technical Assistance Center with a variety of activities that provide an opportunity for self-advocacy on many different platforms.

Self-Advocates Becoming Empowered has launched a self-advocacy start-up toolkit that includes activities focusing on “You Know Yourself Best!”, “Self Advocacy is…?”, and many other tool collections to help your brother/sister navigate self-advocacy. See these links for more details:

https://selfadvocacyinfo.org/wp-content/uploads/2018/07/Self-Advocacy-Start-up-Toolkit-more-power-more-control-over-our-lives-2018.pdf

Massachusetts Developmental Disabilities Council (“MDDC”): 

MDDC developed a Self-Advocacy Leadership Series. The series is training that provides education and training support to people with disabilities to work to improve their skills in leadership and self-advocacy. This program seeks to connect people with disabilities to self-advocacy networks. For more information, click https://www.mass.gov/service-details/learn-about-sals

Ways To Be a Self-Advocacy At Home: 

Supporting your brother/sister can be as simple as encouraging them to make small choices at home. While it can be scary to speak up for one’s self, it is crucial to support your brother/sister at home to make it clear that they have a right to a voice and a choice.

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.  

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.

Massachusetts Sibling Support Network Logo
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

Massachusetts Sibling Support Network Logo
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!