Self-Determination (SD) “is an approach to service delivery in which the participant is given control over the decision-making process for the participant’s supports or services and budget and the participant may tailor the support to meet the participant’s needs.”
This coming Monday, days before Thanksgiving, a hearing is scheduled on the long-awaited regulations for the law called Real Lives, including in the Acts of 2014.
The regulations however do NOT match up with the law’s language.
A few examples:
- The control referenced in the law’s definition is diluted.
- Nearly one page of participant responsibilities are listed in the 4 pages of regulations (not including definition page) while little on DDS responsibilities regarding process and guidance appears.
- No reference to the independent facilitator either by name or by definition since the law has the facilitator as a support while the regulation focuses on a monitoring and evaluating the participant.
- “Parent” is omitted in the regulation’s definition of supporting the participant.
We hope that these regulations were rushed out and the omissions and problems are not purposeful. We don’t believe the present SD regulations can serve as a foundation for DDS to oversee these options.
The Arc has hosted the MA21 Collaboration focused on self-determination since the 2000s and most of our historical partners continue (scroll down here to see).
Along with some amazing volunteers, we have advocated in the past year for fully realizing the “Real Lives” law and other flexibilities for individuals and families.
With your help and voice, we can.
Thanks, Leo!
It’s so important that people who use self-direction, or might in the future, speak out this Monday, Nov. 21, at DDS’ public hearing on these proposed regulations. As Leo notes, the regulations do not uphold important rights granted through the Real Lives Law.
Advocates have noted that the proposed regulations make it HARDER not easier to self-direct, make it easier for DDS to kick people out of self-direction, give DDS the right to decide who will participate by imposing a challenging “ability test” involving burdensome tasks, and do not provide
the facilitators that were promised by the Law. The regs also make it even harder to understand how budgets and calculate and restrict how families can choose to spend their money.
The hearing is virtual, at 1 p.m. Nov. 21, over WebEx,
Come to listen or talk about how you’re feeling about self-direction. Here’s the meeting link:
https://eohhs.webex.com/eohhs/j.php?MTID=m1df8327ec707a11386b6d8d55dfcd217
Or join by phone: Join by phone +1-650-479-3208
Meeting number (access code): 2532 603 6477
Meeting password: ZYsVXb3ZQ78
Leo,
Do we have your comments so parents can see specifically what the issues are? More specifics on how they do not address the Real Lives law would be helpful. I am worried about these proposed regs too. I don’t see how we can implement our son’s program as it is now using self-direction once these regs are in place, but I need more context . Do you have testimony you can share with us parents? I intend to join the meeting.
Karen Donovan
June, I have submitted comments on the proposed regs as a parent of a disabled adult who uses self-direction and has an excellent program which includes two days a week of 3L Place. My son would no longer be able to access this community of learners where he works on so many of his goals –and where he has friends–if these regs are finalized. He has missed so much during the pandemic and DDS could exacerbate his losses with its proposal. Our community deserves well thought out regulations which uphold the rights of participants after waiting for so long for them!
Agree. I have another meeting but am going to do my best to pull out to be part of this discussion. I am in this issue right now because my son needs support at work and works 20 hrs/week. I will basically have to choose between day supports or work which is not fair and definitely not supporting the spirit of this law. He happens to work nights and weekends.
This support requires more money spent. No way around it.
Self direction is difficult and also puts an undue burden on families to be unpaid case managers.
Thank you June for all you are doing!