Blogging From A to Z April Challenge

Advocacy aimed at public policy initiatives have broad, long-term goals. “People with disabilities want to live, learn, work, pay taxes, and be productive and fully included in their communities.”

The above statement is the type of thing that we shouldn’t have to say. Of course people with disabilities want the same things as the rest of society. A child with Down syndrome has the same dreams as his brothers and sisters.

The statement is taken from a collaborative document: Public Policy Agenda for the 116th Congress 2019-2020. It was published by several disability groups:

    • American Association on Intellectual and Developmental Disabilities,
    • American Network of Community Options and Resources,
    • Autism Society of America,
    • National Association of Councils on Developmental Disabilities,
    • The Arc, and
    • United Cerebral Palsy.

It lays out an advocacy agenda in 73 pages.

In addressing federal fiscal policy the group points out that budget cuts to Medicaid, Medicare, Social Security, and Supplemental Security Income (SSI) are more than just political decisions.

“The very lives of our constituents are at stake in these policy deliberations.”

Direct Care Staff

Disability advocates everywhere acknowledge the need for a better system of care for individuals who need it in order to stay at home and work in the community. It is one of the major policy issues addressed in this document.

“The current Medicaid reimbursement system, cost cutting actions by state legislatures and Medicaid officials, and recent strides to raise the minimum wage in several cities and states have exacerbated the workforce crisis already hampered by low wages, a lack of affordable health insurance, high turnover, and a shortage of staff. Demand for these workers from private industry and other human services sectors is also high, leading to competition among industries for workers. These problems have been compounded over three decades, leading to a crisis that presents a grave threat to the lives of our constituents and their families.”

The group understands where and how public policy spending will have the greatest impact and sets goals accordingly.

        • Fund Title III Program for Direct Support Workers to address the direct support workforce shortage and improve the recruitment, training, support, and retention of a qualified direct service professional workforce in each state;”

Ethan’s Law

In the Mental/Behavioral Health section the document addresses a need that we here on The Road find crucial: preventing further violence against people with disabilities from law enforcement/first responders. (Ethan Saylor Alliance)

“Ensure that community-based first responders (e.g., police, emergency medical services, emergency room personnel) are equipped with knowledge about working with people who have I/DD and who are experiencing a behavioral and/or mental health crisis;”

There is an extensive list of goals that changes in Medicaid including:

      • “Recognize developmental and other disabilities as medically underserved populations; [Which will make them eligible for additional federal benefits]

      • Expand access to dental and vision services;

      • Change Medicaid law to mandate HCBS and require a waiver to provide services in institutions;

      • Improve Medicaid so that benefits are portable from state to state, so that beneficiaries and families are not disadvantaged or deprived by moving from one state to another;”

And another list of goals to improve/bolster Supplemental Security Income (SSI) including one that many of our families have discussed:

      • “Recognize that intellectual and developmental disabilities are life-long conditions. Therefore, maintain SSI and Title II as cash assistance programs that are relevant and viable for children and adults with these conditions.”

It is obvious that these groups have worked long and hard to prepare this document. It is thorough and considers a complete array of issues that would improve the lives of not just the Down syndrome community but the I/DD community at large.

Contact any of the groups involved to find out how you can support their work.


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