Dear MDSC member,

 As the Covid-19 outbreak evolves throughout the country and here in Massachusetts, MDSC continues to advocate on national and statewide public policy efforts to protect our loves ones with Down syndrome and other disabilities from being disproportionately or unfairly impacted.

On a national level, we want to thank our partners at NDSS and NDSC , and Global Down Syndrome Foundation f or their leadership of our national Down syndrome community's policy efforts. As Congress negotiates its fourth Covid-19 bill, MDSC is working with them and other colleagues at the national level to ensure that our priorities are included. We ask that you contact your U.S. Senators and Representatives (find their contact information here) and request that they include these priorities in any new Covid-19 legislation:

  • Increased funding of $20 billion to the Centers for Medicare & Medicaid, Home and Community Based Services so that people with disabilities can receive the resources and supports necessary stay in their homes and communities.
  • Increased funding of $12.5 billion for IDEA to support school and related service personnel in the provision of special education supports and services to students through virtual and distance learning.
  • Congress must also ensure that student/parent rights under IDEA are protected. There is sufficient flexibility already provided by U.S. Department of Education guidance.

Additionally, we are advocating for Congress to include these other priorities in the next Covid bill or for the Administration to issue guidance:
  • Designating Direct Support Professionals (DSPs) as “essential workers” so that they have adequate access to Personal Protective Equipment and childcare benefits.
  • Expanding Paid/Sick Leave to all caregivers who have to leave their job to care for an adult with a disability whose program has closed or their DSP becomes ill.
  • Protecting the rights of people with disabilities from discriminatory rationing of healthcare.
You can also make these requests by tagging them on social media using the hashtag #WeAreEssential in your advocacy-related social media posts.
Taking Public Policy Action in Massachusetts

Here in Massachusetts, MDSC is responding to Covid-19 legislatively by advocating for people with Down syndrome and other disabilities on several fronts.

We are very thankful to Governor Charlie Baker, EOHHS Secretary Marylou Sudders and DPH Commissioner Monica Bharel for all they are doing to meet the most urgent needs in the community-based human services sector.

As the needs of our community continue to increase, we are supporting efforts statewide to bring additional help to the human services sector. We recently signed onto a letter, drafted by The Collaborative – the Providers’ Council, ABH, ADDP and the Children’s League – and co-signed by more than 200 community-based human services organizations, urges that the Governor, Secretary and Commissioner to act quickly to:
  • Institute a similar hazard pay provision for all purchase-of-service contracts, ensuring community-based human services staff will receive the same salary incentive as their state counterparts who are doing similar work;
  • Expedite increased access to testing across EOHHS congregate care and allow human services workers access to rapid testing facilities that have been set up throughout the Commonwealth; and
  • Notify MEMA about requests from the community-based human services sector for Personal Protective Equipment (PPE) and do everything possible to help us acquire PPE to meet the impending surge.

Health Care Triage
In addition, MDSC is backing efforts by other disability advocates, including The Arc of Massachusetts , to ensure that Massachusetts' standards and protocol for health care triage during the Covid-19 pandemic are carried out with equity for all members of our community including our loved ones with disabilities.

Documents like Massachusetts' recently published “Crisis Standards of Care” are vital to guiding health care workers in making life and death decisions. While we appreciate the inclusion that gender, race, disability, etc. should not be used as a reason to withhold care, we believe that more is needed. To prevent confusion and mistakes when making split second decisions, we ask you to reach out Governor Baker to ask him to operationalize these critical standards with training and detailed protocol.

Hospital Visitation Accommodations
 MDSC is also advocating, along with others in the disability community, including the Disability Law Center , for a statewide policy that would allow for reasonable accommodations for people with disabilities in hospital settings. The new policy would allow people with disabilities to have a support person remain with them in the hospital. (Currently, hospitals can develop their own visitor policies and in some cases, hospital policies have excluded guardians and other support persons.)

Please contact your state legislators ( find your senator and representative's contact info here ), and ask them to ask the Department of Public Health to support such a policy.

Education Supports

In late March, the Massachusetts Down Syndrome Congress was invited to participate in the Emergency Response Group: Special Education & COVID-19. This group, which is coordinated by Massachusetts Advocates for Children and comprised of representatives from various statewide advocacy organizations, meets weekly to coordinate the collective response to the education needs of children with disabilities. During these meetings, the group focuses on state level executive and legislative advocacy, information and resources for parents, individual advocacy, and media. With the ever-changing landscape of special education in the midst of the global pandemic, collaborating with and learning from leaders throughout the Commonwealth is critical in order that we may all better serve our members and families. The MDSC has also developed a comprehensive list of timely education resources here .
Additional Supports

Together, as we face the challenges of social distancing and fully protecting our loved ones with Down syndrome during this time, MDSC is continuing to provide vital information, education, resources and opportunities for meaningful connection virtually. See our full list of Resources for Families of Children with Down Syndrome During the Coronavirus Pandemic.

In addition, we are continuing to support our families in the greatest need through out MDSC CARES program. Learn more and how you can help here.

We’re thinking of all of you and sending our sincerest wishes for your safety and well-being during these difficult times. Please don’t hesitate to reach out to us for any support or information.

In Solidarity,
Maureen Gallagher
Executive Director