Today is Patriots Day. It’s a day when we celebrate the Boston Marathon and the battles of Lexington and Concord. It’s a day, too, for remembering those who died and were injured in 2013 when two terrorists detonated bombs on Boylston Street. A common theme between 2013 and 2020 will be grief. Many within and outside our community have already experienced loss due to this virus. Others have missed memorializing the loss of a loved one due to the social distancing requirements.
There is another type of grief which we are experiencing – the loss of social connections, the loss of a normal routine, and the loss of control. Let’s minimize our sense of loss. We can connect by phone and video, exercise, and take the time to reach out to others. Let’s remember that persons with intellectual limitations or emotional distress may require extra support at this time. To paraphrase Deborah Norton, our Board President, “Let’s be human.”
We can reach out to others. As someone once said, we only have what we give.
- Recent Updates and Resources
- Key Issues in State Advocacy
- News on Our World and the Pandemic
- Upcoming Webinars on Grief and Loss
Recent Updates and Resources
- Catch up on last week’s webinars from our COVID-19 Weekly Webinar Series here on our YouTube channel. Subscribe to be notified as soon as new ones are posted.
- Looking for activities to do while practicing social distancing? Pathways to Friendship’s Phoebe Goodman developed a new directory to help people still connect with others, increase skills to support future face-to-face relationships, and work toward a valued role in the community. Examples include indoor, virtual and community-building activities. Learn more here.
- Your advocacy made a difference! On April 15, automatic payments to SSI (Supplemental Security Income) beneficiaries was announced by the Department of Treasury.
- Advocacy continues on the federal level in a number of areas. One example is home and community-based services (the HCBS) program which reimburses states for their disability services. The Arc and other groups are advocating for increased federal funding for all states beyond the present 6.2% bump (Massachusetts typically receives 50% match and presently receives 56.2%). Increased reimbursement is essential when you consider the massive costs to maintain staff and equipment, during this pandemic and for what will be a slow return to normalcy. Participate in the #WeAreEssential campaign.
- Most recent update from Department of Developmental Services (DDS) Commissioner Jane Ryder.
- Most recent PCA Caregiver Update from MassHealth.
Key Issues in State Advocacy
Governor Baker’s administration has been responsive to our community in a number of ways including flexibility for our safety net. However, this unprecedented crisis requires further urgent action on the part of the administration and our advocacy.
- Proactively Address our Safety Net: Provider (primarily private, nonprofit) safety net which provides essential services along life’s continuum (24/7 to drop-in, day/employment, transportation, etc.)
- Further financial commitment for group home settings – funding to address ALL increased costs including staff time and additional pay during this crisis is key to avoiding destabilization (look at New York and our own nursing home crises). You can help by taking proactive action now here.
- Thank you to the staff who have been working throughout the crisis – you are the heroes along with hospital staff and first responders.
- As of April 20, retainer or administrative payment for closed day programs had not been distributed. This is difficult for those deploying staff (roles such as keeping connected with individuals/families, assisting in food and RX delivery, or working in group home settings). The cash is essential, and it is committed.
- Proactively Address our Safety Net: Individuals and families in their own homes (the extended safety net), primarily through MassHealth and/or more individual (family) support type services through DDS and other state agencies. We appreciate the increased PCA hours and flexibility. We also need:
- Further in-home support due to behavioral, medical, or physical requirements.
- Further assistance with delivery of medications and groceries.
- Further financial assistance including allowing guardians to be PCA providers.
- There is a need for more testing and personal protective equipment (PPE). This is more of a federal issue, but we will need local outlets for PPE once it is fully available.
- Health care guidance provided to hospitals for triage and treatment.
- Special Education continues to be problematic operationally, but we hear of teachers in school districts who are models for the system at large.
The Arc thanks all staff and agencies working to meet the family and individual needs during this crisis. We urge ALL providers working with individuals and families in the community to follow the lead of chapters and provider organizations that are going the extra mile to help families and individuals unable to meet basic needs during this crisis. When your resources are not enough, there are responsive groups in each community during this crisis. Connect with these groups as well and when needed bring DDS area offices in for assistance.
News on Our World and the Pandemic
- iBerkshires: Pandemic Forces ‘Total Change’ for Berkshire County Arc: This fall, hundreds marched in a Berkshire County Arc Down Syndrome Family Buddy Walk but today it’s quiet as staff at BCArc work to keep the homes as Covid-19 free as possible. Some quotes from Ken Singer, CEO, “ This whole crisis puts stress on everyone, but certainly, for the people we serve, it’s difficult…the agency is actively seeking more personnel to help carry the load…We’re always hiring, but we are pressing that now,…we have expedited our hiring system and training system. But overall, we’re doing well. Our staff is dedicated and taking care of our folks.”
- WCVB: Sheltering with disabled clients to fight off virus’s spread
- The Atlantic: Americans With Disabilities Are Terrified
- The Guardian: ‘We’re on our own’: how the pandemic isolates families of disabled children
- ABC News: The other coronavirus ‘front line’: At home with special needs children
Upcoming Webinars on Grief and Loss
- Today, April 20 at 4:00PM: American Association on Intellectual and Developmental Disabilities (AAIDD) presents “End of Life and Loss.”
- Wednesday, April 22 at 2:00PM: Collaborative on Faith and Disabilities presents “Covid 19: Faith Community Responses and Resources for People with Intellectual and Developmental Disabilities and their Families.”