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  • Writer's pictureTogether for Choice

2019 in Review and Looking ahead to 2020 (12/6 Webinar Transcript)

Updated: Oct 31, 2022

December 6, 2019 Year in Review

  1. Our focus during the course of this past year has been on the Settings Rule, Section 14(c) of the Fair Labor Standards Act, and the Disability Integration Act.

  2. In late March CMS finally issued its new guidance under the Settings Rule. TFC did not get all the changes we requested, but the new guidance did take the important step of revoking the old guidance which presumed that certain settings were isolating and therefore automatically subject to heightened scrutiny. Under the new guidance, the determinative factor is not the size, type, or location of the setting. Instead, the key is whether the setting is providing the type and extent of community integration desired by the individuals served as set forth in their person centered plan. Now, it is important to get the states to follow this new guidance.

  3. It is clear that the current CMS is not going to make more change to the Settings Rule. Therefore, we are pushing forward with a legislative solution that would amend the Medicaid statute to ensure that CMS recognizes choice and would require CMS to substantially revise the Settings Rule.

  4. Ashley led a group of our members on a visit to Washington DC in late March, right after CMS issued its new guidance and met with the congressional delegations from California, New Jersey, New York and Texas. Our focus during these meetings was on the Settings Rule and on preserving 14(c).

  5. We also met with CMS and discussed the new guidance. We expressed appreciation for what the new guidance did, but also explained our continuing concerns about the Settings Rule. We pressed CMS to make sure that states revisited their transition plans in light of the new guidance and to make sure that states were properly applying the new guidance.

  6. In May, when the Department of Labor conducted an online survey to gather the public’s views on 14(c), we asked our membership to submit responses. You responded to our request and your submissions in support of 14(c) far outnumbered the submissions of others who want to see it repealed. We teamed with VOR and ACSESS in this effort.

  7. At the same time, we met with members of the Illinois congressional delegation individually at Misericordia in Chicago. We had each member tour Misericordia’s work programs that rely on 14(c), meet some of the employees of the work programs and with their parents. We then explained to the member our concerns. After seeing the work programs and meeting the individuals employed, they immediately understood the importance of 14(c). We also took that opportunity to explain the concerns we have about the Disability Integration Act. We pointed out that certain disability advocacy groups do not speak for the entire disabilities community, despite their claims to the contrary.

  8. TFC worked with the National Council on Severe Autism to reach out to members of Congress to express concern about the Raise the Wage Act and Transformation to Competitive Employment Act, both of which seek to end 14(c).

  9. We were successful in getting Rep. Schneider from suburban Chicago to sponsor an amendment to the Raise the Wage Act that would preserve 14(c) for individuals with significant intellectual and developmental disabilities employed by non-profit entities providing services to these individuals.

  10. In connection with the Disability Integration Act, we have adopted a strategy to try to take advantage of the extreme conduct of ADAPT. When we learn that ADAPT has conducted one of its sit ins at the office of a member of Congress, we contact that member. We explain what TFC is and we apologize for what ADAPT has put them through. We explain that we have a different point of view and also believe in respectful dialogue rather than disruptive actions. We than ask to meet with the member of Congress. Our goal is to make sure that members of Congress know that ADAPT and other organizations do not speak for the disabilities community and that there is another perspective they need to listen to.

  11. At the last HCBS conference in August, we learned of CMS’s and ACL’s efforts to establish a set of metrics to measure quality at settings that receive Medicaid waiver funding. We believe it is very important to have a seat at the table as these metrics are being developed. We learned that CMS and ACL were relying on work by some researchers at the University of Minnesota. We have contacted those researchers and are in discussions with them about providing feedback on their proposed metrics.

  12. In November, Ashley again led a group to DC to meet with members of Congress. Over the course of three days we met with 50 members from California, Connecticut, Georgia, Mississippi, New Jersey, New York and Tennessee. We also met with the staff of the House Energy and Commerce Committee and the Senate HELP committee. These committees are the key committees of jurisdiction for the Medicaid statute and the DIA. During these meetings we discussed our concerns that states were not following CMS’s new guidance under the Settings Rule and that CMS was not doing enough to make sure that states followed the new guidance. We also discussed the need to preserve Section 14(c) and our concerns about the DIA. We were joined in our meetings by VOR. The staff of the two committees seemed to clearly understand the problems with the DIA.

  13. On this same trip east, we met with CMS in Baltimore. We raised three issues: (a) the need for CMS to communicate more effectively with the states about application of the new guidance issued last March, (2) the importance of meeting the needs of those with the most significant medical and behavioral challenges, and (3) our desire to be involved in the development of the quality metrics. We followed up with a call with ACL to make sure they knew we wished to be involved in developing the metrics.

  14. Also in November, the US Commission on Civil Rights held a briefing on the impact of Section 14(c) on the civil rights of individuals with disabilities. Our pro bono legal counsel, Chris Lowther, secured one of only 18 speaking slots at the end of the briefing. He made it clear that 14(c) is essential for the employment prospects of those with significant intellectual disabilities. He pointed out that the real civil rights issue is choice and repealing 14(c) would eliminate choice for these individuals.

  15. The Commission is accepting public comments through Dec. 15. We again have asked our members to submit comments supporting 14(c). Again you have responded. Please submit a comment if you have not already done so. Also, please send us a copy of your comment so that we don’t have the same experience we had with the Department of Labor survey where the Department has refused to make public all the comments that were filed.

  16. Thanks to your support, 2019 has been a very successful year. We look forward to continuing our work in 2020. 14(c) remains under attack at the federal, state and local level. We need to continue to educate policy makers on preserving 14(c) for those with significant intellectual disabilities. We will also continue our advocacy for a change to the Medicaid statute to enshrine choice and override the Settings Rule. We will also continue our opposition to the DIA. This proposed statute provides us with a good vehicle for discussing the importance of preserving ICFs as a choice. Finally, we will continue or work on trying to influence the quality metrics that CMS and ACL are developing in conjunction with the University of Minnesota researchers.

Scott Mendel

Chairman, Together for Choice

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