26February

If not now, when?: The Importance of Advocacy in the Disabilities Community

If not now, when?: The Importance of Advocacy in the Disabilities Community


Webster’s Dictionary defines advocacy as “the act or process of advocating or supporting a cause or a proposal”. A more meaningful description of advocacy, however, comes from Rabbi Hillel:

If I am not for myself, who will be for me? But if I am only for myself, who am I? If not now, when? (Rabbi Hillel, Ethics of the Fathers 1:14)

So what does advocacy really mean? It is important to stand up for yourself and what you believe in, and it is most important to stand up for fellow members of your community.

For individuals with disabilities, it is critically important to learn how to self-advocate. They need to feel safe and supported in stating what they wish for themselves, what they do and do not like and their opinions. As the people who work with them, we understand this is a concept called person-centered care, and it is the most powerful form of respect. It recognizes that the individual has full rights, and they are in control.

But there is an important political consideration in advocacy that stresses the importance of self-advocacy as well the importance of advocating on their behalf.  

Parents of children with disabilities learn they must advocate hard to get Medicaid funding for their children and the special education services their children need. The struggle does not end as the children become adults.

The vast majority of individuals with developmental disabilities receive their services through federal and state funding. Because most are either unemployed or underemployed, basic (and I do mean basic) subsistence funding often comes from SSI (supplemental security income). Healthcare is often funded by Medicaid, granted through the SSI process. The important services that help them achieve their dreams, remain safe and secure in their communities and live meaningful lives are funded by something called “the Medicaid waiver”.

With the economic downturn, declining federal and state revenues and the tremendous growth in the Medicaid and Medicare budgets, there is competition for precious federal and state dollars and always the threat of a budget cut.

Jewish Family & Career Services Tools for Independence strives to provide the best person-centered care available. We work with individuals and their families to tailor our services to their needs. We ensure staff members are well selected and trained to do their jobs and that they are provided with oversight and guidance from our team. About 90 percent of our clients have public funding for their services. Yet every year we must raise considerable funds to cover the shortfall between the cost of service provision and what we collect in client and third-party fees.

Today I am outraged because the governor and legislature are considering a cut to the fees that pay providers for serving adults with developmental disabilities. We have not had a fee increase in 10 years. Given the rising costs of health care, gas and other operational expenses, stagnant fees are in fact a decade-long fee cut. I understand the competition for dollars, but proposing a fee cut for our most valuable and vulnerable citizens means there will be fewer services, more cookie cutter services and, sadly, services that might be less safe.

It’s never time to rest. It is always time to repeat Rabbi Hillel’s words and follow his charge to us. If it were not for tireless leaders in the disabilities movement, there would not be special education in the public schools, individuals would still live in institutions and a significant portion of our population would be deprived of living their dreams.

I challenge all of us to look at our neighbors who have family members with disabilities or who have disabilities themselves and ask ourselves If not now, when? Stay abreast of national and state policy discussions that affect individuals with disabilities and their families.  Pay particular attention to budget actions that affect Medicaid funding. In Georgia, DD services are addressed in the budget of the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD), but the Medicaid funding for these services is in the Department of Community Health’s Budget. The Georgia House is currently reviewing state budgets, and there is a proposed 0.74 percent cut for providers in the DCH budget.  You might wish to contact your house representatives as well as senators opposing these cuts as DD providers have not had a rate increase in more than 10 years, despite increased costs associated with service provision. 

Really, the best thing you can do is let your legislators know you value people with disabilities and support their need for services. They are valuable members of our community!

For more information on the services of Tools for Independence or to get involved, please contact  TFI@jfcs-atlanta.org.

Written by Eve Bogan, Posted in JF&CS - Hope and Opportunity Happen Here, Developmental Disabilities Services

About the Author

Eve Bogan

Eve Bogan

Eve Bogan is director of JF&CS’ Developmental Disabilities Services and was recently named to the Developmental Disabilities (DD) Advisory Council of the Department of Behavioral Health & Developmental Disabilities (DBHDD). Bogan will serve two years on the council.