By Julie Carter and Hannah Weinberger-Divack

Medicaid has provided funding for home- and community-based services (HCBS) for nearly 40 years, which has allowed many low-income beneficiaries who otherwise would not have been able to afford it to receive long-term care in their homes and communities. But that care (and care planning) has not always consistently been person-centered. The Centers for Medicare & Medicaid Services (CMS) recently issued new rules designed to ensure that the services provided are targeted to individuals’ needs and preferences. As the story below shows, person-centered planning is critical for providing effective care and preventing institutionalization.

Maria’s Story

Maria is 83 years old. She had no major health concerns until she suffered a stroke last year that left her partially paralyzed and in a wheelchair. She can no longer perform many activities of daily living unaided, but she likes tending to her own grooming and personal hygiene. She also is able to manage her money and to take her prescribed medications. It is important to Maria that she retains her independence and dignity.

The stroke also affected her vision. Maria reads more slowly now, and needs to use large-text formatting. She has some hearing loss that makes her feel isolated; despite using hearing aids, she often feels left out of conversations and it is a struggle to talk on the telephone. But Maria still loves being at the beach, sleeping in and teaching her great-grandson how to cook. She wants to attend the free art classes offered at the local museum.

When Maria’s case manager asks Maria’s doctor what services she needs, the doctor outlines which activities are usually affected by stroke and paralysis. Based upon that report, Maria is informed about state-provided services. Her paid caregivers do not take her out of the house except for doctor visits or physical therapy. She must wake up when her caregivers dictate. One caregiver insists on crushing her pills in applesauce and wiping her face with a wet washcloth, as if she were a child. Maria feels increasingly isolated and falls into depression. She is lethargic and unwilling to eat. She no longer wants to go to her appointments and is too tired to teach her great-grandson. Eventually, her concerned family moves her into a nursing facility.

A Person-Centered Plan Makes All the Difference

Many of us in the aging services community have worked with older adults like Maria who are receiving care that is not targeted to their needs and preferences. Conversely, we also have seen models that put older persons at the center of care. But this doesn’t happen enough. Fortunately, the law is catching up to what many of us believe—that person-centered long-term services and supports embrace a more effective way to deliver care and prevent institutionalization.

New federal rules now require Medi-caid HCBS to be provided using a “person-centered planning process”. These rules, released March 17, 2014, as part of a package of reforms, are now in force, though to date, some states struggle with implementing them effectively. People like Maria do not always get the care they want, need and are entitled to receive.

The Rules for HCBS

The following list of people’s rights shows how portions of the CMS ruling might affect someone like Maria.

The right to lead the service-planning process. Maria leads the planning process wherever possible. If she were incapacitated by her stroke, or by any other cognitive impairment such as dementia, her representative would step in—though Maria’s goals and needs would still be the process’s primary focus. But in Maria’s case, she is capable of meaningfully leading the process and including any representative she chooses.

States that are ahead of the curve build these planning processes around questionnaires focused on consumer strengths and goals, not what services the state offers. When Maria is asked open-ended questions about what is important to her, she says “independence,” “the beach,” “sleeping in,” and “art classes.” The care plan then reflects these desires.

The right to receive assistance to make informed choices. Maria must be offered “informed choices” regarding services and supports, including who will provide those services and supports. CMS expects that all services and support options will be articulated and discussed with her. She must receive necessary information and support to help her choose.

When done properly and with an eye to strong consumer protections, the care-planning process includes questioning Maria about her options. Does she feel that she has choices about whether to stay in the community or go to an institution, or who would provide her care and what services she is to receive? These questions serve both as a reminder to the care planner and notice to Maria (and anyone assisting her) that she has the choice to select from a range of options.

The right to control who is in the room. Maria gets to choose who does or does not attend the planning meeting. The meeting does not happen without Maria and her chosen supporters present. Maria does not want the attendant who treats her like a child, but she might choose another attendant, one or more family members, a close friend or an ombudsman, if available. Her doctor does not get to decide what care she will receive based upon a checklist of common stroke effects. Her voice is the most important one in the room.

The right to a plan that reflects their choices. Maria and her supporters must be able to understand the plan. It must be in plain language, in a language she can comprehend and be accessible, given her visual impairment. She must have enough time to read it carefully, to have anything she does not understand explained and to give informed consent in writing once she understands and agrees with the plan. But if Maria does not agree, or if later she realizes that her care plan never addressed her desire to sleep in or her goal to take up painting, she can amend the plan and appeal the state’s decisions.

Protecting the Real Marias

Our Maria may not be a real person, but real people are affected every day by care planning. The new CMS rules require this planning to be truly person-centered to protect each HCBS recipient’s rights. States are making some progress in their attempts to comply with the rules, but they must do more. As advocates, we also must do more to protect and empower every real Maria.

 

Note: This article appears in the May/ June 2015 issue of Aging Today. It was posted online 5/09/2015.