Will ECF CHOICES Let a Parent Serve As Their Child’s Support Worker?

/ January 18, 2022

By Janet Shouse

Years ago when I first heard the term “Medicaid waivers,” and people began trying to explain this very complex system of getting supports and services for people with disabilities, I thought there is no way I am ever going to learn all the intricacies of these waivers. Then I began to work at the Vanderbilt Kennedy Center, and I was able to hang around with folks who truly understood how waivers worked, and I got to ask about 3,006 questions.

I thought I had a fairly good understanding of Tennessee’s waivers. I learned recently I didn’t know as much as I thought I did.

I have a friend whose son is in the Employment and Community First CHOICES waiver program, in Group 6/Comprehensive Supports for Employment and Community Living. This friend was not happy with the care and supervision her son was receiving in his Community Living Supports home, and her care coordinator told her that she could bring her son back to her house and become his direct support worker if an agency would hire her to do so. When she told me this, I think I laughed out loud, as I had never heard of such a thing, and in fact, I was absolutely certain this was wrong. So, because I like to be right, I checked with the person who would know, Matthew Brown, director of Employment and Community First CHOICES for TennCare.

The response I received stunned me:

From Matthew Brown: “There is no prohibition for a provider to hire a family member of a person supported. There are also not any rules prohibiting the family member from supporting their child as a DSP. However, each provider agency is allowed to create their own policies on the subject and are held to the same standards of care for each member they are supporting.”

So, just to make sure I understood, I asked whether this was a new policy due to the DSP shortage. I began to get excited because I thought there might be a good number of parents whose adult children were in Group 6 who might be interested in this option, and I asked if I could share this information.

The reply: “While you’re welcome to share this info, it’s not a new or revised policy. I also would caution that many providers do not allow parents to serve as the DSP for their children, so while this is welcome news, it might be more challenging to accommodate than expected.”

While what I’m about to share with you next is primarily about employment for parents of those with disabilities, one of the ways this information could affect the employment of those with disabilities is if the individual needs support on the job and an agency doesn’t have the staff to provide that support. However, specialized training is required to provide employment supports. And the goal is to provide supports that might lead to enough independence (or natural supports from co-workers) so as to fade out paid supports in areas where that’s possible for the individual.

So before I started telling parents that they could be paid to serve their son or daughter as a direct support professional, I wanted to make sure the information I was sharing was accurate, and I contacted Patti Killingsworth, assistant commissioner of TennCare, and the chief of Long Term Services & Supports. She is one of the folks who has helped me gain a greater understanding of waiver supports and services.

Patti’s reply was thoughtful and went into significant detail, and I’m sharing it with her permission:

Everything Matt shared is correct.  This is a very challenging and emotive issue.

TennCare values family caregivers and is committed to supporting family caregivers not just as a source of natural support, but as a critical aspect of the relationships that are essential to a person’s quality of life.  It is one of the reasons that we prioritized family caregiver supports under our Enhanced HCBS FMAP Plan—to recognize the burden COVID has placed on family caregivers and to offer additional support to give them a break. (Editor’s note: “The Enhanced HCBS FMAP Plan” is Tennessee’s plan to use the additional funding for home and community based services that is coming from an increase of 10 percentage points in the federal matching rate from April 1, 2021-March 31, 2022, provided by the American Rescue Plan passed this spring by Congress.)

With some 80%-85% (depending on the study) of long-term services and supports being provided by unpaid family caregivers, we simply can’t begin to supplant all of those supports by beginning to pay for all of the care that’s provided.  Medicaid just doesn’t have the resources to do that. 

So, we seek to find the proper balance — of supporting and sustaining family caregivers, without supplanting them.

We also fully recognize the workforce challenges that providers face and the challenges that family caregivers face, challenges that have been exacerbated by the COVID-19 public health emergency, and that no one is more committed or capable of providing support for a person that those who love them.

That said, the dynamics that can arise in these situations can be quite challenging.  We don’t want to create situations where person-centered planning is less about what a person needs than about the impact of those decisions on the family’s income and economic stability. 

We also don’t want to undermine our efforts to support people to experience greater independence in their own lives, less dependence on paid supports when possible.  And we are especially committed to ensuring that every person has every opportunity to pursue employment, community integration, and other opportunities for personal growth and development.  Our primary goal—in particular for adults—must be to help support the person’s growth and opportunities for independence and inclusion. 

This aligns with the Joint Position Statement on Family Support issued by the American Association on Intellectual and Developmental Disabilities and The Arc:

“Family support services and other means of supporting families should be available to all families to strengthen families’ capacities to support family members with intellectual and/or developmental disabilities (IDD) in achieving equal opportunity, independent living, full participation, and economic self-sufficiency.”

If a family caregiver leaves their paid job to begin providing paid supports to their loved one with a disability, what happens if those supports are no longer needed, or even if fewer paid supports are needed?  Will issues arise because of the economic impact to that family? 

From the inception of the CHOICES program (and subsequently, the Employment and Community First CHOICES program), TennCare has had a clear policy that prohibits paying family caregivers living in the home when services are received through Consumer Direction.  In this instance, the person, or often the person’s family caregiver, is acting as the employer of record, and the inherent risks and challenges are not mitigated by a more typical third-party employer/employee relationship. 

TennCare has not had an explicit policy with regard to providers and their employees.  In short, providers have not been prohibited by TennCare from hiring family members living in the home to provide paid services.  The provider sets their own policy and assumes the responsibility as the employer in all aspects. If the person’s needs change, the provider is responsible for reassigning the employee to assist other people, rather than fighting to maintain the employee’s current level of income by maintaining the current level of paid supports for their loved one.

To be clear, neither has TennCare encouraged these practices, or made significant efforts to educate people about this option—due in part to the many challenges elaborated above. 

Some of the additional concerns she cited about sharing this information with families included:

  • A possible huge increase in the number of families seeking this option, overwhelming the Medicaid/TennCare system.
  • Requests to be paid for services that have been provided by family caregivers for their loved ones for years as “natural supports.”
  • Many provider agencies may not be willing to place themselves in the middle of these challenging dynamics.

While I understand the challenges, there are a couple of the reasons that I feel it’s important for families to understand this option, including:

  • Some families are unable to find provider agencies willing to serve their adult son or daughter, either because the agencies don’t have the staff or they don’t serve the area where the families live. Yet technically these individuals need and are approved to receive services they cannot get.
  • During the pandemic, many family members have had to reduce work hours or quit or lost their jobs due to the necessity of providing supports to their loved one.

Patti’s response closed with:

We never want to offend (to the contrary, we respect and honor), and absolutely do not question the value of family caregivers and their commitment to their loved ones.  Where public policy meets real life is rarely black and white, and this is one of those many instances where we tread carefully while striving to do the best we can to offer flexibility while maintaining accountability, and to always keep at the forefront the person-centered goals we are committed to support people to achieve.

I hope this is helpful.

Thank you, Patti, I think it was very helpful!

I appreciate Matt’s and Patti’s honesty in explaining both the possibilities and the challenges of having a family member serve as a loved one’s direct support professional. I want to thank them for working with me to let families know about this possible option. I value their willingness to try to educate me, and for the work that they do day in and day out. This is one time I almost hate to write this, but if you have questions or concerns, please email me at janet.shouse@vumc.org. Thank you for reading!

Editor’s Note: The Rise to Work blog is taking a short break. The posts should resume in April.

Janet Shouse smilingJanet 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.

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