As the pandemic began, our community responded quickly, adapting to the crisis.
- Individuals with disabilities accepted the reality they faced, many living with less support or losing vital connections to family and friends.
- Our direct support professionals became heroes.
- Many families took on caregiving 24/7
As re-opening begins, we need to consider the reality and vulnerability of individuals, families, staff and the network which supports them.
Adults with autism, Down syndrome, cerebral palsy, or other intellectual and developmental disabilities served by the Department of Developmental Services (DDS) will lose services if funding and policies don’t meet the requirements of the re-opening period and thereafter. This includes:
- 10,000 persons who receive day and employment services
- 9,000 individuals in congregate living
- 1,300 new students in transition from high school to adult life
- Additional persons receiving MassHealth services
The network of services will not recover if decisions for additional funds and flexible policies are delayed. These services are funded and prescribed by the Commonwealth through DDS and MassHealth.
- Families rely on these programs to go to work or to provide temporary respite care for their loved ones.
- Day programs are laying off staff and some will close.
- Residential homes are NOT funded during the day and they cannot sustain the costs of daytime supports.
- Insufficient PPE for providers and individual/family homes continues to be a concern.
- Families don’t have access to in home behavioral supports for those with high acuity.
Agencies need retainer billing during the phase-in period, and as they achieve full capacity for not only regular costs, but for additional staffing, PPE, setting up safe settings to manage distancing, transportation, in-home staffing, and technology.
Our constituents rely on the leadership of federal and state health and human services. Join us in our #DontCutUsOut campaign.
Black and Brown Lives Matter
On May 29, former President Barack Obama shared a statement on George Floyd that challenges us “to work together to create a ‘new normal’ in which the legacy of bigotry and unequal treatment no longer infects our institutions or our hearts.”
As the pandemic began, many Massachusetts citizens worried about the inequity within our healthcare institutions. We saw editorials and news reports, documenting that persons from diverse communities or those who struggle economically do not have equal access to healthcare. This was a major concern as the state’s Crisis Standards of Care were developed.
The Arc recognizes President Obama’s challenge to review all our institutions and accepts it. As we work with other stakeholders to make long term change in our system of supports to fully include all, we have identified three short-term activities to pursue with partners:
- Transition: what are transition experiences of people of color? What is the percentage of students of color within the annual transition class (1,300 in total this year)?
- As we continue our advocacy to raise wages and respect for our workforce, we will publicly promote the leadership of people of color both among staff and our family community.
- We will explore the experiences of brown and black staff (DSPs), persons with disabilities, or others who are part of our community. Do they experience implicit or explicit racism in their interactions with individuals, families, or others?
True change must be part of a long-term strategy. As we advocate for systems change to benefit persons with disabilities, we accept President Obama’s challenge. Any change should also ensure that “the legacy of bigotry and unequal treatment no longer infects our institutions or our hearts.”
Trauma-Informed Care Resources
As we come out of the pandemic, we need to revisit the importance of trauma-informed care. For those who missed the trauma webinars last week, we will host a new one in the summer. In the meantime, here are two links to explore: a TED Talk on trauma-informed care from 2014, or a longer, more clinical session from 2018 on the clinical implications of trauma for individuals with intellectual disabilities.