By Aaron Agulnek
Director, Government Affairs
Jewish Community Relations Council
As a government affairs professional and policy wonk, people often ask me: “How does a bill become a law?” Of course my first response always begins with a question – Have you seen School House Rock? In Massachusetts, we tend to mirror that federal process, with the Legislature branch (the House of Representatives and the Senate) and the Executive Branch (the Governor). I often remind people that our government was specifically designed to be slow and reactive in order to protect against overreaching or overreacting. Sometimes this is frustrating, but you have to always keep your eyes on the prize and keep forging ahead. Success requires patience, passion and an ability to compromise.
As the Director of Government Affairs at the Jewish Community Relations Council of Greater Boston (JCRC), I am primarily responsible for the development and implementation of our public policy agenda. In other words, I try to figure out ways to convince our government to help bring about change to address our concerns. One of the areas where there is the greatest need for change is in the area of Disability Services. The JCRC is recognized as a statewide advocacy leader for people with different abilities, and we are constantly working to rededicate state resources to help ease the burdens on families.
Last year, we worked in partnership with Jewish Family and Children’s Service (JF&CS) and the ARC of Massachusetts to change the law defining the eligibility standards for the Department of Developmental Services (DDS). When we started, the law mandated that beneficiaries have an IQ of 70 or less to be eligible for DDS services. We strongly believed that this rigid qualification was arbitrarily drawn and was not at all related to the needs of the individual, and that a more flexible standard was more appropriate. So, we started reaching out to some of our allies in the legislature and the disability advocacy community, including JF&CS and the ARC, to see what could be done to change this status quo. After meeting with several legislators, we agreed that a bill filed by Representative Dan Winslow would be a great vehicle. This bill, An Act to Adopt a Definition of Intellectual Disability Consistent with the American Association of Intellectual and Developmental Disabilities, gave more discretion to DDS and could make a real difference.
We knew this bill would be brought up along with a number of others at a public hearing by the Joint Committee on Children, Families and Persons with Disabilities on November 11, 2011, so we quickly developed our advocacy strategy. We started by meeting with the co-chairs of the committee, Representative Kay Khan and Senator Michael Rodrigues, to educate them. We talked about the need for change and why Rep. Winslow’s bill would be an important step—and we promised to bring a broad contingent of experts and families to the hearing to press the case.
So, on November 11, we joined with JF&CS and many others to pack the hearing room and advocate in support of this bill. One parent who joined with us explained to the committee how she was forced to choose between her own career and caring for her intellectually disabled son once he turned 22 and aged out of state services. I will always remember the testimony from Betsy Closs of JF&CS, who argued so eloquently that the success of special education services in helping students learn and grow was later preventing them from getting the services that they need. This was an amazing and inspiring day to hear about the struggles for families and also the triumphs. We testified about the bill and the Jewish community’s commitment to creating opportunities for those with different abilities and our belief that the government must be a more robust partner.
You would think that this would be a slam dunk. It was a bipartisan bill with support from the committee and a majority of the legislature. The advocates all agreed and there just seemed to be so much momentum – but months and months went along with no word about the bill. Why, you might ask, does a bill that makes so much sense, that has so much support, fail to move through the legislature?
Well – the short answer is money. More eligible people means more money being spent by the state on DDS (which was already way underfunded). While everyone was sympathetic, we were told that there would just not be the resources necessary to implement this change.
Now this was clearly a setback, but we would not let it end there. We continued to press our case to anyone who would listen. We kept at it, confident that we had the facts on our side and that given the right set of circumstances, we would be able to help lead the state. The right opportunity came on July 23, 2012, when the Massachusetts Appeals Court held in Tartarini v. Department of Mental Retardation that:
[T]he definitions of mental retardation and significantly sub-average intellectual functioning, as they are currently drafted, do not adequately fulfill the legislative directive that clinical authorities be described in the regulations. As a result, we conclude that the department cannot deny services on the basis of an assessment of intellectual functioning as provided in 115 Code Mass. Regs. § 2.01.
In other words, the court essentially said that the state could not use IQ alone as a factor in determining eligibility, and that DDS would need to go back to the drawing board and come up with standards that considered real life. So where did DDS start when trying to develop new regulations? They looked back at the hearing from November 2011 and reached out to those experts who testified in order to get input and recommendations…including the JCRC! So, we went back, talked to our allies and suggested that DDS consider the flexible standards included in Representative Winslow’s bill. After a few months of debate and discussion, a new version of this bill worked its way through the legislature and was signed into law by Governor Deval Patrick. While the new standards were nowhere near perfect, it was a step in the right direction and a victory for everyone in Massachusetts: An IQ of 70 would no longer be an absolute bar to DDS services!
We joined with our friends, colleagues and ordinary citizens to be a lever, bending that arc of justice that was the hallmark of Dr. Martin Luther King Jr.’s vision. We were thrilled by this success but knew that this was not the end of the road, but a new starting point. To build on this and to create a world where every resident has the opportunity to live their lives of their own choosing with dignity (and with fun!), we must continue pushing the envelope, demanding accountability and offering solutions. It is crucial that we remain committed to advocacy. Change does not come overnight and bills do not become law merely because they represent the “right thing to do.” It takes resources, strong relationships and recognition that the status quo is not acceptable to continuing bending the arc.
So in the spirit of School House Rock, I have a homework assignment for you: Call your state representative and state senator and thank them for supporting the JCRC’s agenda and for working with us to make the world a friendlier, more decent place for people with a range of different abilities.
To find your elected officials, enter your information into this website: http://www.wheredoivotema.com/bal/MyElectionInfo.aspx.
If you have any questions or would like to learn more about how you can be a successful advocate, please do not hesitate to contact me at aagulnek@ jcrcboston.org.
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