We've been hard at work communicating with Centers For Medicaid Services (CMS), Health & Human Services (HHS), The Whitehouse, and members of congress. We are making headway but we need an urgent message sent out today November 12, 2023 to CMS.
The proposed language in the 1915c Waiver Technical Guide implies to states that parents, spouses and legal guardians should be used only as care providers of last resort. Today, November 12th is the last day for comments about this language. Can you copy the comment below and submit it at the provided comment link so we can get this language removed? Here are three easy steps:
1. Visit this link: https://www.federalregister.gov/documents/2023/09/11/2023-19500/agency-information-collection-activities-proposed-collection-comment-request
2. Select the comment bubble - you'll be taken to the comment page for the 1915c Technical Guide. Under "Category" select "Health Provider - Longterm Care"
3. Paste this comment into the comment field:
Thank you for the opportunity to provide public comments on the draft of the CMS Technical Guidance for 1915c waivers. I am concerned about the new CMS Review Criteria language related to paying Legally Responsible Individuals (LRIs) for their labor as care workers.
Throughout the COVID-19 public health emergency, LRIs nationwide were finally recognized and compensated for their vital caregiving labor. Cost-neutral paid parent and spousal caregiver programs were so successful that CMS Deputy Administrator and Director Daniel Tsai recently called them “one of the silver linings of the pandemic.” However, despite the vocal support of senior CMS leadership, the draft technical guidance for 1915c waivers continues to suggest hiring LRIs only as last resort caregivers and repeatedly reminds states that they can make it as difficult as possible for LRIs to be paid for their labor.
I suggest the following changes to the draft’s Appendix C-2-d to bring it into agreement with the opinions of senior CMS leaders, including Director Tsai, who recently stated, “We will tell states in extra bold letters that there are no federal barriers for paying parents and legal guardians as paid caretakers.” This technical guide is where these “extra bold letters” need to appear.
On page 131, the paragraph that begins, “States are not required to…” should be eliminated. Contrary to Director Tsai’s stance on the issue, this paragraph goes out of its way to remind states they can put up whatever barriers they like and even suggests the ‘caregiver of last resort’ barrier as a good idea.
On page 132, the second bullet point suggests states should limit children’s care to 40 hours per week from an LRI, even if that child’s only care worker is the LRI. Multiple states are using this suggestion to slash the care hours of children with profound needs who require round-the-clock intensive supports to a cap of 40 hours, increasing the chance of unnecessary institutionalization for the children. This care cap should be eliminated from the technical guide.
On page 132, the third bullet tells states to address the “foreseeable risks” associated with LRI, but there is no similar stipulation to address the risks associated with hiring an unrelated outside caregiver. There is no evidence that LRIs are more likely than strangers to commit fraud, abuse, or neglect. Therefore, this bullet point, which reinforces systemic bias against family caregivers born from outdated beliefs about social class, public benefits, and disability, must be eliminated.
On page 132, the bullet beginning with “Any additional safeguards” should be removed. This is yet another invitation for states to put up wholly unnecessary barriers to try to avoid paying LRIs for the work they are already performing.
Throughout Appendix C-2-d, and especially in the box on page 133, the previous language requiring states to ensure that the LRI as caregiver is in the “best interest” of the child has been replaced with a requirement for the state to guard against the LRI’s self-referral. Bad actors will likely use this technicality as an excuse to disqualify all LRIs from being paid care workers due to their parental role in selecting providers. This provision should be eliminated and changed back to the original language, which requires that the LRI’s care be “in the best interests of the participant.”
I urge you to consider these changes to the draft technical guide, which will align it with official statements and intentions of CMS leadership. Your attention to these concerns will help ensure that LRIs may receive fair compensation for their essential labor.
Sincerely,
[YOUR NAME]
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Thank you everyone for your continued help and support. We have been so busy with emails and meeting to advance our cause that we haven't been able to keep you all up-to-date as we'd like to. Your help with this comment is HUGE!
Nathan Hill