Authorized by the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) in 2000 and guided by a vision to create inclusive communities where all people with disabilities are valued and thrive, the Pennsylvania Developmental Disabilities Council empowers individuals with developmental disabilities and their families to help shape policies that impact them.
Today, a global pandemic poses significant risks and challenges for people with disabilities. There are dramatic gaps in access to scarce resources, fears of discrimination in health care and rationing, dangerous barriers to services that are life sustaining, and inequities in the infrastructures designed to support communities.
As our community responds, recovers and rebuilds, people with disabilities and their families must be actively engaged and participating in advocacy. Our voices must be heard now, and at every step of the way, as we endeavor to return to normalcy. Your active participation can help shape a “new normal,” where people with disabilities and their needs are considered in the creation and development of public policy and not an add-on or afterthought.
Systems designed to provide services to individuals with disabilities have been dramatically impacted by the pandemic. Individuals with disabilities and the aging who are served in congregate facilities have suffered and died at an alarming rate. We must protect them. It is important to learn from this painful lesson and build a future where all people are supported to live fully inclusive lives, with the customized services they need in order to thrive in their own homes and communities.
PADDC’s Guiding Principles for Pandemic Recovery
Concerning Health Care:
- All people must have access to life saving health care, without discrimination on the basis of disability or perception of quality of life or life expectancy. Medical professionals and providers of services need to implement best inclusive practices in health care delivery to ensure the health and wellbeing of all community members, including those with disabilities.
- All people have the right to make informed decisions and to be supported when seeking medical care. Individuals who need direct supports from paid professionals or unpaid family caregivers in order to communicate their needs during the provision of/receipt of medical care, must be afforded that support to do so. They must have the right to communicate their needs, understand information, and make decisions. This right must always be afforded in all settings.
- Personal protective equipment (PPE) is life saving and must be provided to all who need it. Individuals who receive services must be provided PPE regardless of setting. Supporters, both paid and unpaid, should be recognized as essential personnel in public policies in order to access PPE.
- All students must receive quality education. Schools should be supporting parents and families by providing all necessary resources to deliver educational services to students with Individual Education Plans. Parents must be provided information about their rights to a Free and Appropriate Public Education (FAPE), extended school year services and compensatory education.
- Economic stability is essential to ensure basic health, safety and welfare for all people. Workers with disabilities are fearful that their livelihoods will be permanently lost if they are unable to return to work due to high risk conditions or discrimination in rehiring practices. All employers must be held accountable to provide safe working conditions for all employees and refrain from discrimination in hiring practices.
Concerning Need for Connectedness:
- Technology for communication, employment, maintaining relationships, accessing essential information and education is essential. The digital divide that has long existed for people with disabilities has become evident as the broader community is reliant on such access to maintain essential functions during this pandemic. Individuals with disabilities must be provided the resources, education, and training to close the digital divide and be empowered to fully engage during this time and into the future.
- Isolation, fear, anxiety, and emotional distress are experienced by many members of the community in times of crisis and must be addressed. People with disabilities and their families are not immune to these feelings. Additionally, many in the disability community will face isolation for longer periods of time than others because they need to take additional precautions to reduce their chances of becoming sick. Resources must be made available to address the mental health and emotional well-being of those who need support, now and as long as needed.
Our community has suffered significant loss and continues to experience challenging circumstances. Millions of people in all parts of our nation and state have faced negative impacts and are fearful. We are facing uncharted territory as we learn how to mitigate risk and attempt to return to our daily routines while maintaining health and safety. As we move from recovery to rebuilding, we need to advocate for policies and practices that provide full participation and access to all members of the community, including those with disabilities of all ages.
The Developmental Disabilities Council is authorized though a piece of federal legislation (PL 106-402) called the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). The purpose of the Act is to assure that individuals with developmental disabilities and their families participate in the design of, and have access to, needed community services, individualized supports and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life through culturally competent programs.
Pennsylvania Developmental Disabilities Council Vision Statement
We envision a Commonwealth comprised of inclusive communities where all people with disabilities are valued and thrive.
Pennsylvania Developmental Disabilities Council Mission Statement
The Council engages in advocacy, systems change and capacity building for people with developmental disabilities and their families in order to: Support people with disabilities in taking control of their own lives; Ensure access to goods, services, and supports; Build inclusive communities; Pursue a cross-disability agenda; Change negative societal attitudes towards people with disabilities. In so doing we will bring about benefits to individuals with disabilities other than developmental disabilities and, indeed, to all people.