chevron-down Created with Sketch Beta.
October 01, 2015

Person-Centered Planning? Not Without Family Caregivers!

Julie Carter

(The pdf for the issue in which this article appears is available for download: (Bifocal, Vol. 37, Issue 1).)

Medicaid helps low-income beneficiaries stay home by providing funding for home and community-based services (HCBS). This care is vital but not without flaws. In 2014, the Centers for Medicare & Medicaid Services (CMS) issued new rules on person-centered planning, designed to ensure that the services provided are tailored to individuals’ needs plus their goals and preferences.1 States vary in their implementation of these rules, but even where they are fully in effect, sometimes the important voices of family caregivers are left out of the conversation. This hypothetical scenario, focused on long-term services and supports (LTSS) and compiled from Justice in Aging’s experiences working with advocates on managed care, illustrates some of the issues facing caregivers today.

Christina’s Story: When Managed Care Ignores the Family Caregiver

Christina is a 51-year-old grandmother. Her mother, Maria, is 83 and is receiving care in her home after a stroke that left her partially paralyzed and in a wheelchair. Christina works full time, provides child care for her grandchildren, and also spends several hours a day providing care and companionship for her mother who also receives paid care funded by her Medicaid coverage.

Since her stroke, Maria has struggled with speech issues and hearing loss. When Maria’s managed care organization (MCO) did an assessment of Maria’s needs, they never spoke to Christina. The assessment was done over the telephone and at a time when Christina was at work. Despite her attempts to contact the MCO to make sure they understood all of Maria’s preferences and needs, Christina never has her concerns taken into account.

Maria’s care plan does not include sufficient hours, but when Christina alerts the MCO that some of Maria’s goals are not being met, she is told that hours cannot be added just for her convenience. It is her responsibility to cover any missing care.

Christina starts skipping as much sleep as she can to spend more time with her mother. She asks for a reduction of hours at work, and her employer suggests she might need to look for a new job if she cannot be reliable. Exhausted, she turns to her doctor who diagnoses her with anxiety and arrhythmia and places her on medication for both.

Strengthening LTSS by Supporting Family Caregivers

Understandably, much of the focus of Medicaid LTSS is on paid caregivers. But most LTSS consumers like Maria rely on family caregivers, usually adult daughters like Christina, to meet many of their service needs.

In 2013, unpaid caregivers provided an estimated 470 billion dollars and 37 billion hours of care.2 In 2009, the average family caregiver provided nearly 20 hours per week of care for nearly five years.3

As a nation, we already rely on family members to make the system work, and that reliance is likely to increase as our population ages. But the current toll on family caregivers is devastating. They often suffer physical, mental, and emotional impacts, lost wages and benefits, job insecurity, and long-term financial insecurity.4

These stresses on the caregivers’ time and health, exacerbated by care plans that over-rely on family, can eventually force them to give up the role. This in turn leads to a decline in the available care for loved ones and possible institutionalization.

Medicaid’s Role in Protecting Family Caregivers

The person-centered planning rules in the new HCBS regulations raise two important issues for family caregiving: voluntariness and the need for assessments.


Written service plans for Medicaid LTSS should clearly identify all services and supports the consumer will receive on a regular basis and indicate specifically who will provide those services.5 This includes both paid and unpaid care.

The rules are clear that unpaid care must be voluntary. But this voluntariness is in jeopardy when states reduce paid Medicaid services because of the presumed availability of unpaid care. In practice, some states or managed care plans offset paid Medicaid services—services that reflect needs that have been identified through the assessment process—with unpaid services, without regard to the caregivers’ availability, ability, or willingness. In such states, these allotments are defended with claims that consumers are just requesting paid services for the caregiver’s “convenience.”6 But a caregiver being coerced into care is not simply “inconvenient,” it is dangerous, antithetical to personal autonomy, and against the rules.

Caregiver Assessments

While assessments of need are the norm for LTSS consumers, they commonly leave out the vital voice of family caregivers. Identifying and incorporating the caregivers’ needs into the plan is a necessity whenever unpaid caregivers will be relied upon to implement any elements of the person-centered service plan.7

Only one HCBS rule—for 1915(i) State Plan Services—requires caregiver assessments during the planning process.8 This leaves the bulk of HCBS recipients without this important safeguard. But several states have gone beyond the regulations to include caregiver assessments even where they are not strictly required.

For example, Minnesota uses a Caregiver Questionnaire which allows the assessor to understand the informal caregiver’s needs, to inform the planning process, to create back-up plans, and to identify resources that may be available to ease caregiver stressors or better allow caregivers to flourish. The Questionnaire asks about the caregiver’s health, stress levels, employment, supports, and many other aspects of their lives that can impact their ability to provide care. The questionnaire includes follow-up referrals to assistance, if the caregiver is interested.9

Similarly, Tennessee’s managed care contracts require caregiver assessments as part of a certain face-to-face visit intake visits. This includes an overall assessment of the family caregiver’s willingness and ability to contribute effectively to the LTSS consumer’s needs.10

As with voluntariness, caregiver assessments help keep consumers safe with willing, responsible, and capable care. While there is no current national consensus for what a caregiver assessment should include, the author knows of one taskforce that is working with CMS to draft potential guidance for necessary or expected components.

Supporting Caregivers Going Forward

Dedicated family caregivers are necessary to keep many in the aging and disability communities in their homes rather than confined in institutional settings. We simply need to do more to give these caregivers the support, information, and protection they need to provide their ever-more-necessary care.

There are several ongoing efforts to support family caregivers at the national level. The Assisting Caregivers Today (ACT) Caucus is a bipartisan, bicameral Congressional caucus focused on elevating family caregiver’s needs.11 The “Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act” (S. 1719/H.R. 3099) would require the Department of Health and Human Services to develop a national strategy to support family caregivers.

Additional clarity in federal guidance, state rules, and MCO contracts will help ensure LTSS consumers and their caregivers are not forced into damaging, unsafe, or uncertain care situations. Family caregivers must be volunteers and should not be the only thing standing between a consumer and institutionalization. Care plans should realistically offer enough paid hours for the health, safety, and security of consumers without the over-reliance on family that exacerbates already difficult situations.

“Convenience” statutes should not be used as a weapon against caregivers to force them to provide more care than they are willing, capable, or comfortable providing. Reducing caregiver concerns to mere convenience is an attempt to belittle and delegitimize them. Caregivers are not Medicaid’s enemy.

For assessments, it is imperative that the caregiver assessment requirement be extended to all HCBS regulations covering all Medicaid consumers, not just 1915(i) State Plan Services consumers.12 As caregiver assessments are implemented, they should be used to gauge the employment status and other caregiving responsibilities of family caregivers as well as their stress level, health, and need for knowledge or skills training. CMS should provide states with more guidance in doing assessments well. Further, states should not just identify what caregivers need but take positive steps to provide the services and supports necessary to keep caregivers in their vital roles.

As with every Medicaid rule or regulation, the challenge is to make they are implemented in a way that truly benefits LTSS consumers. All HCBS rules are intended to keep consumers in their homes or in the community. The goal of person-centered planning is greater independence and a better quality of life for seniors and people with disabilities and their families.

To accomplish any of these changes, it is time to embrace and celebrate the role of family caregivers as a loving, vital, and heroic choice. Let’s not squander this precious resource. For every hypothetical Christina or Maria, there are millions of real ones, and they need our support.

This article is the second in a series on the legal and practical realities of person-centered planning.13

For more information on the CMS person-centered planning rules and state implementation, see Gwen Orlowski & Julie Carter, A Right to Person-Centered Care Planning, Justice in Aging Issue Brief (April 2015), available at

Reinhard, et al., Valuing the Invaluable: 2015 Update, AARP Public Policy Institute (July 2015), available at

Lynn Feinberg & Rita Choula, Understanding the Impact of Family Caregiving on Work, AARP Public Policy Institute (October 2012), available at

See, e.g., Caregiving in the U.S.: 2009, National Alliance for Caregiving in collaboration with AARP (November 2009), available at

42 C.F.R §441.301(c) (1915(c) HCBS waivers); 42 C.F.R. §441.540(b) (1915(k) Community First Choice waivers); 42 C.F.R. §441.725(b) (1915(i) State Plan Services).

See, e.g., Carol Marbin Miller, How Florida limits care for its most medically fragile kids, Tampa Bay Times (January 3, 2013 10:06pm), available at

For more information on caregiver assessments, see Kathleen Kelly, et al., Listening to Family Caregivers: The Need to Include Family Caregiver Assessment in Medicaid Home-and Community-Based Service Waiver Programs, AARP Public Policy Institute (December 2013), available at

42 C.F.R. § 441.720(a)(4).

Caregiver Questionnaire: DHS-6914-ENG, Minnesota Department of Human Services, available at

10 Statewide Contract with Amendment 2 (Tennessee Managed Care Contract), Article (July 1, 2015), available at

11 Frederick Kunkle, Caregiving in U.S. to be focus of new congressional caucus, Washington Post (March 3), available at

12 While the legislation undergirding 1915(i) State Plan Services (42 USC 1396n(i)) includes more references to assessments than the 1915(c) or (k) language (1396n(c) and (k), respectively), the requirement of an explicit caregiver assessment is regulatory rather than legislative. See 79 FR 2985 for CMS discussion of the inclusion of a caregiver assessment provision, available at

13 Julie Carter & Hannah Weinberger-Divack, Older Adults Have the Right to Receive Person-Centered Care: A Hypothetical Case, Aging Today (May 9, 2015), available at 

Julie Carter

Justice in Aging is a national nonprofit with a mission of fighting senior poverty through law.

Julie Carter is an Irmas and Health and Aging Policy Fellow whose work focuses on person-centered planning and managed care. This article is the second in a series on the legal and practical realities of person-centered planning.