At the Heart of M44: Empowering, Person-Centered Practices
While person-centered practices have been around since the 1960s, this customized approach to service provision took firm root in the intellectual/development disabilities field in the late ’80s and early ’90s. It is the cornerstone of my earlier—and current-day—work as a Social Worker/advocate and nonprofit leader, as person-centered practices can and should apply when supporting any segmented population. Along the way, I developed intensely strong feelings about the use of the term “person-centered” (and X-centered variations) when it doesn’t match up with the realities of how someone is treated, served, and supported. (Too often, “person-centered” is nothing more than a buzzword.)
Back in 1991-1992, I was part of a small but dynamic group of professionals, led by Michael Smull and Susan Burke Harrison, who helped introduce person-centered planning and supports in Maryland… and beyond. A special joint-project between the University of Maryland and the Maryland Developmental Disabilities Administration, we led development (and implementation) of customized Essential Lifestyle Plans for individuals with “severe reputations.” These folks were deemed “difficult to place” due to behavioral issues and other challenges that kept them in state institutions or repeatedly returning to these horrible places after “failed” attempts to live in the community. (Typically, the one-size-fits-all system failed them rather than unsuccessful placements ever being the “fault” of the individual.)
In essence, we were trying to get community providers to FINALLY see these folks as full human beings, fall in love with them and everything that made them special — and to want to serve them because of who they are rather than what assessments and other records said about them. Historically, people were admitted to programs based on diagnosis, functioning level, sex, age, etc., with little to no regard for that person’s interests, preferences, passions, personality, or unique needs. And there was no true customization of services. Also, this was the start of “money follows the person,” which meant that if a provider sent someone back to the institution — they no longer got to keep the money attached to that vacancy or “bed.” State funding was now attached to the person instead; a change that was long overdue. Before this, there were residential providers who would give up on someone prematurely, send them back to the institution, and then not fill that vacancy with someone else for sometimes a year or more. NO MORE! Individuals being served were finally CONSUMERS of these services, and got to pick their providers rather than the other way around.
Considered cutting-edge at the time, Essential Lifestyle Plans (ELP) focused on what was important TO and FOR the person entering or returning to the community. Planning started with must-haves or have-nots (Non-Negotiables), preferences (Strong Preferences and Highly Desirables), and a person’s dreams before designing the custom services and support structures required to meet various needs/goals. And planning involved the person who owned their plan, as well as the people in their lives THEY wanted to include who best know them and their needs — whether that be family, friends or both. Professionals were merely facilitators of this process who tied it all together, along with identifying and/or suggesting resources, supports and frameworks necessary to bring the ELP to life. We also helped individuals decide where they wanted to go for their services, and made sure that proposals from provider agencies were responsive to the needs of the individual and their ELP.
In interest of brevity, I won’t describe this earlier work in more detail. But, if it might interest you… here is a video that explains this earlier project, how far person-centered communities have come since then, and what is involved in person-centered practices from a philosophical and service delivery standpoint:
Key Tenets of Person-Centered Practices
Person-centered practices emphasize the importance of placing the individual at the center of decision-making, ensuring that their preferences, values, and goals guide all aspects of their supports and services. And we consider all aspects of a person’s life when assessing and addressing needs.
Here are the key tenets of person-centered practices:
1. Respect for Autonomy: Person-centered practices respect and support the individual’s right to make choices and decisions about their own life, care, treatment, services, and supports. This includes honoring a person’s story, preferences, values, and competence/expertise. (People are experts in their own lives.)
2. Individualized Approach: Person-centered practices prioritize individualization, recognizing that each person is unique and has their own strengths, preferences, and needs. Services and support are tailored to the individual’s specific circumstances, goals, and aspirations.
3. Active Participation: Individuals are actively involved in all aspects of their services, care, and support — including decision-making, goal-setting, and planning. Their opinions, preferences, concerns, demands, and input dictate direction of services and supports. At the end of the day, all decisions are made by the individual. They drive these processes, with support of any professionals involved.
4. Empowerment and Choice: Person-centered practices empower individuals to exercise choice and control over their own lives. They are supported to identify and pursue their goals, make informed decisions, and participate in activities that are meaningful and fulfilling to them.
5. Holistic Approach: Person-centered practices take a holistic approach to services and supports, considering the individual’s physical, emotional, social, financial, and spiritual well-being. This may involve addressing not only their immediate needs but also broader goals, aspirations, and quality of life.
6. Relationship-Centered: Person-centered practices prioritize building positive and collaborative relationships between individuals, their families, care partners or care givers, and support networks. These relationships are based on trust, mutual respect, and open communication, and they play a critical role in supporting the individual’s well-being and success.
7. Flexibility and Adaptability: Person-centered practices recognize that preferences, needs, and circumstances may change over time. Services and support are flexible and adaptable, allowing for adjustments to be made as needed to better meet the individual’s evolving needs and goals.
8. Cultural Sensitivity and Inclusivity: Person-centered practices respect and embrace diversity, including differences in culture, ethnicity, religion, sexual orientation, gender identity, and background. We strive to create inclusive environments where all individuals feel valued, respected, supported, and seen/heard.
9. Continuous Learning and Improvement: Person-centered practices promote a culture of continuous learning, reflection, and improvement. Providers and organizations are committed to ongoing evaluation and feedback, seeking to enhance their practices and better meet the needs and preferences of the individuals they serve.
By adhering to these key principles, person-centered practices aim to promote dignity, empowerment, and well-being for individuals receiving services and support, fostering greater satisfaction, autonomy, and quality of life.
How This Relates to M44
Everything that M44 does and offers, from interest and support groups to TRIAGE team assistance, will reflect these values and guiding principles. In addition to direct support of the Stage IV community, we will strive to help healthcare professionals learn more about what is and isn’t “person-centered” regarding their communications with patients, and adopt more respectful, empowering practices — such as, at most basic of levels, ASKING US what day/time is good for us with appointment scheduling and remembering our preferences.
There is more to us than our diagnosis alone, and cancer treatment must fit into our busy lives rather than this illness dictating the flow of our existence. We also have the right to drive our own care, and say “no” when we choose. And, no, this does not make us a “difficult” patient. It makes us an empowered one.
In addition to the core tenets of how M44 operates as an organization — and our model that includes community-defined and led programming — it is imperative that we also engage in advocacy, education, and the promotion of greater awareness. We WANT to help medical professionals adopt and master person-first language, cultural sensitivity/competence AND humility, and the firmly-held belief that patients are both CAPABLE and rightfully in the driver’s seat of their own lives. For anyone who provides services of any kind, this takes listening and practice. Daily practice. That is why we refer to this as patient-centered practices rather than service delivery, a modality or framework, or an overarching philosophy. It’s a way of life, and continuous learning.
Come as you are. Tell us your unique needs, and we will listen. And together we will find or create solutions to meet challenges and human need… across the complicated spectrum of this thing we call LIFE.
Now that you know more about this key foundational element… let’s revisit M44’s Mission Statement to see how person-centered practices are at the heart of all we will do — now and in the future:
MoreFor4, Inc. is a national 501(c)(3) organization that addresses unmet financial and other needs of persons living with Stage IV cancers. In addition to unique programming BY and FOR our diverse community, M44 creates innovative, customized, rapid-response solutions for individuals who lack fiscal resources, family, and adequate support systems.
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