When Advocacy Efforts Find a Receptive Ear and Heart

By Janet Shouse

About the Author

Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

I want to share a story about advocacy.

I share this story not to toot my own horn but to show that sometimes you may find a legislator willing to listen and willing to help.

On Dec. 13, I attended a hearing of the Joint Subcommittee on Education, Health and General Welfare, a subcommittee of the Joint Government Operations Committee. The House and Senate members were reviewing the regularly scheduled Comptroller’s audit of the Department of Intellectual and Developmental Disabilities. (I’ve written several times about the findings of this audit.)

As the auditors explained the concerns about pay issues for direct support professionals that were highlighted in the audit, one statistic cited was the fact that Tennessee ranked last in a survey of 16 states on DSP wages. Two legislators, in commenting on this statistic, mentioned that Tennessee lacks a state income tax and that might be a factor.

As I listened, I realized I was not sure if these two legislators meant that DSPs in Tennessee don’t pay income tax, so therefore it makes sense that their wages are lower. Or if they meant because our state doesn’t have an income tax as a funding source, Tennessee would not have the revenues to pay wages as high as states with an income tax.

So, a couple of nights later, I wrote to each legislator asking what they meant. I don’t live in either legislator’s district, so I wasn’t sure if either of them would respond or not. In the email, I included information from the National Core Indicators, an effort by public developmental disabilities agencies to measure and track their own performance, which provides specifics on DSP wages, and I pointed out that at least two of the states pay more than Tennessee despite their not having an income tax.

I also shared my personal story of the struggles our family has had in finding and keeping direct support staff.

One legislator did not respond, which is not unusual.

The other one, Rep. John Ragan, R-Oak Ridge, did respond. He responded with a long and thoughtful reply. The second sentence of his email said, “It is gratifying to have you express your interest in how our state is governed.” Let me tell you, I don’t often get that kind of response!

Rep. John Ragan, R-Oak Ridge

Rep. John Ragan, R-Oak Ridge

In helping to explain his comments from the hearing, he also wrote, “Tennessee ranks between the fifth and seventh lowest cost of living state in the union, dependent upon which index you consult.  What this fact means practically is that it takes less money to maintain a same standard of living in Tennessee compared to 43 – 45 of the other states.”

Rep. Ragan closed his email by saying: “The Health Committee on which I sit is considering potential solutions.  I trust this reply has addressed your questions.”

Well… the cost-of-living comment kept running through my mind and led me to research the cost of living in Tennessee.

I found a website that indicated the notion that Tennessee’s “low” cost of living is not true across the state. The site actually ranks Grundy County, Tennessee, as the county with the lowest cost of living in the entire country. It ranks No. 1. But Williamson County, where my family and my son live, ranks as the county with the 2,991st lowest cost of living in the nation.

https://smartasset.com/mortgage/cost-of-living-calculator#tennessee/cost-of-living

So, I wrote back to Rep. Ragan to share that information. And he continued to be willing to respond, writing, “Interest and input from concerned and knowledgeable citizens, such as yourself, is critical to improving service and solving problems.” Again, not the typical kind of reply I get.

Rep. Ragan also said he thought it was important to loop the Department of Intellectual and Developmental Disabilities into our “conversation,” and he asked if I would permit him to share the information in my emails with the department. I assured him that was fine with me.

Rep. Ragan then sent a letter to DIDD Commissioner Debra Payne as well as to the other members of the subcommittee, sharing my concerns and asking for an informal response from DIDD.

The line I loved from Rep. Ragan’s letter was “In summary, because of questions arising in the subject hearing, my office is responding to valid inquiries from concerned Tennessee citizens.” I don’t live in Rep. Ragan’s district. I can’t vote for him. But, nevertheless, he viewed my concerns as “valid inquiries” from a concerned citizen! Again, not often the kind of response I receive, particularly after I’ve written several emails to the same legislator.

Rep. Ragan then shared Commissioner Payne’s response, which explained that community providers have some leeway in setting wages, based on local economies and the local job market. Commissioner Payne also went on to say that the DSP shortage is not strictly an issue of wages, and that DIDD and TennCare are creating a credentialing program for DSPs and working toward helping provider agencies refine their recruitment and retention efforts.

I thanked Rep. Ragan for sharing Commissioner Payne’s letter with me, and I figured that was that.

Then, during Disability Day on the Hill on Feb. 14, I was delivering folders of information about the Vanderbilt Kennedy Center, Tennessee Disability Pathfinder and the IDD Toolkit, an online resource for medical professionals to better serve adults with intellectual and developmental disabilities, to legislators who serve on health-related committees. Rep. Ragan was one of the legislators, and he was in his office when I stopped by.

He invited me to come in and told me some news.

He said that he had spoken with members of the Republican Caucus Policy Committee about the DSP workforce shortage and the pay issues, and several of them said they had concerns about those issues as well. Rep. Ragan, who is chair of the Caucus Policy Committee, then took a request for increased DSP wages to Gov. Bill Haslam on behalf of the Republican Caucus. He and the governor discussed and negotiated the issue.

After their negotiations, Gov. Haslam agreed to include an increase in his budget request.  The state budget now includes a 1% increase for DSPs, personal assistants, and case management. The state’s portion of this increase is $1,811,500, which, with federal matching dollars, will come to $5,305,900. But the General Assembly still must approve the budget.

Rep. Ragan acknowledged that the final increase was somewhat less than many in the caucus wanted.  Nonetheless, he said, the increase was necessary and overdue.  He also pointed out that equally important, the increase fit within the state’s constitutional requirement to balance Tennessee’s budget.

Rep. Ragan said although he and the governor negotiated this pay increase, the entire Republican Caucus and its leadership deserve recognition for their overwhelming support.

I want to thank Rep. Ragan for his concern about the pay that direct support professionals receive and about the effect that the workforce shortage has on individuals, such as my son, who need these supports. I also want to thank him for being willing to engage with me in an ongoing, thoughtful discussion about this issue. And I want to thank him for addressing the concerns with DIDD, with members of his caucus and with the governor. Thanks, also, to the Republican Caucus for its support, and I want to thank Gov. Haslam, too, for adding this increase into his budget.

Folks, I realize that ultimately this increase will raise DSP wages only a small amount, but in many ways, this feels like a big deal to me.

If you feel the same way, please take a moment to write and thank Rep. Ragan at rep.john.ragan@capitol.tn.gov and Gov. Haslam at bill.haslam@tn.gov.

If you want to connect with your own legislators, go to http://www.legislature.state.tn.us/ and in the upper right-hand corner, you will see “Find My Legislator.” Enter your address, and the names and photos of your state representative and your state senator will appear. If you click on their photos, you will find their phone numbers, office addresses, email addresses and a short biography. You will also be able to see what bills they are sponsoring or co-sponsoring, what committees they serve on, what activities they are involved in in their communities.

If you really want to dive deep into the General Assembly, across the top of the website, you will see the words “Legislators,” and you can click on that to get a full list of the Senate members or the House members. Next across the top is the word “Legislation,” which allows you to search for bills. Next is “Videos,” and if you can’t attend a session in person, you can watch the session live or you can watch it later. (This is very useful to learn what legislators are thinking and talking about during committee meetings.) Next is listed “Schedules & Calendars,” which allows you to see what committees are meeting and when. Finally, at the top, you find “Committees,” which lists the various House, Senate and Joint committees and who is on each committee. These lists provide a way to be able to contact all members of a particular committee that may be voting on a bill that you support or oppose.

While we know that contacting your OWN legislators for whom you can vote carries the greatest weight, sometimes reaching out to other legislators, as with Rep. Ragan, can be very beneficial as well. If legislation will affect you or your loved ones personally, I encourage you to share your story with legislators. Many lawmakers haven’t experienced disability personally and don’t have that perspective. You can provide that perspective.

As always, if you have questions or concerns, please email me at janet.shouse@vumc.org.