Feature Issue on Self Direction
Putting Self-Determination Back in Self-Direction
As of 2023, about 1.5 million people, or their representatives, were self-directing some of their support services. People with intellectual and/or developmental disabilities, account for only about 17% of this group, research shows. Self-direction means that people with disabilities or their representatives can allocate Medicaid funds to recruit, hire, train, pay, and supervise the people providing their services. As this number increased rapidly during and following the COVID-19 pandemic, some challenges have occurred that need to be addressed. The current patchwork of different state regulations needs to be coordinated and streamlined, and the basic principles of self-determination need to be more prominent in the self-direction system.
Cultural anthropologist Margaret Mead famously noted that changing the world begins not with many people uniting around an idea, but with a small, thoughtful group.
We reflect on Mead’s body of work as we think about the small groups of committed disability advocates, self-advocates, and service administrators who knew that the people most affected by a policy or decision need to be part of its creation and implementation.
As of 2023, more than 1.5 million people, or their representatives, directed their own long-term services and supports, according to Applied Self Direction. While that number has grown rapidly in recent years, studies suggest that among people with intellectual and/or developmental disabilities (IDD), fewer than 20 percent self-direct their home and community-based services (see Self-Direction & IDD: What the NCI Data Show).
Self-direction gives people the decision-making authority and responsibility for choosing the long-term services and supports that will help most in achieving the lives they want to live. As an alternative to traditional IDD services delivered via an agency model, self-direction gives participants the responsibility for managing some or all aspects of service delivery. It is difficult to overstate the effect that taking control of one’s services can have on a life. Through lived experience of disability, along with decades of professional advocacy, service provision, and research experience, we have witnessed how self-directed services for people with IDD can be higher quality and more efficient than services delivered via an agency model. At its best, self-direction is rooted in the ideals of person-centered planning and self-determination.
There are several challenges, however. Complexity and differing regulations and guidelines among state programs creates significant confusion for people with disabilities and their representatives trying to procure services. Stricter and onerous accountability and compliance rules that were implemented amid the COVID-19 pandemic, in some cases, seem to take precedence over the authority of the person with disabilities to self-direct the services so essential to their quality of life.
‘Overwhelming and Daunting’
When I (BJ) first started on my journey with self-direction many years ago, I said it wasn't for me. The regulations can be overwhelming and daunting for people who aren’t as knowledgeable about the system or as skilled an advocate as I am. These barriers can make somebody not want to self-direct. That was probably the major reason why I didn't want to do it at first. It was brand new, and the regulations seemed like a morass that I didn't want to bother with in my life. Then I realized that self-direction is good for a lot of people, and I have used my own experiences with it to speak, travel, and advocate for others.
But there are still problems. Self-direction kind of misses the mark with people who live in group homes. In a state-operated organization, like we have in New York State, residents are allowed to receive only “other than residential” services, which limits their opportunities to self-direct. I always say self-direction is for the haves and the have nots. If you're in a state-operated group home, you are a member of the have-nots because you've never been given an opportunity to make a choice, and self-direction is about the choices you make. You're just told, “Here, make this choice.” You don't really have people guiding you; you're guiding yourself, without having the proper education on what self-direction can truly be in your life.
There are other important disparities in the self-direction system that are beginning to be recognized and need to be addressed. Demographic data from the National Core Indicators, for example, show significantly higher rates of self-direction among younger, white people who have developmental disabilities, but not intellectual disability.
Getting Here
These and other challenges do not temper self-direction’s historic progress. As the principles of self-determination were being formed in the 1990s – freedom, authority, support, and confirmation of the role of self-advocacy – small self-direction projects began in several U.S. states that were funded by the Robert Wood Johnson Foundation.
The people participating in and leading these projects knew early on that people most affected by policies or practices need to be part of shaping them. As people with disabilities, their families, and allies were trusted to use their authority to plan and to choose and manage their publicly funded supports, these projects demonstrated important lessons that carry through to more sophisticated systems today. Much has been written about those projects from a research and evaluation perspective. Many of us still in the field today were part of small, local initiatives that were linked to larger state efforts to put people with (IDD) and their families in control of needed services.
Tony Phillips, who self-directs his services, with Samika Frazier, a direct support professional.
Without the early work of disability service administrators and the participants, self-direction as we know it today would not exist. There was barely a path for those who did not ‘fit’ or those who were simply not going to allow themselves to use system resources that did not prioritize them. If not for these courageous trail blazers, we could not be advocating today for a return to the values of self-determination.
Indeed, a small group in New Hampshire ignited a movement. Tom Nerney led this initiative and was the director for the first nationally funded pilot project on self-determination. He became co-director of the Robert Wood Johnson Foundation’s Self-Determination for Persons with Developmental Disabilities, a $7 million national program assisting states in transforming their service delivery systems to support persons with disabilities to control services they need to live active and meaningful lives.
Others were attracted to the spark, and the Self-Determination Movement paved the way for every state, making self-direction an option in at least one home and community-based services (HCBS) program. Programs featuring the option include the HCBS State Plan Option (1915(i)), Community First Choice (CFC) State Plan Option (1915(k)), Self-Directed Personal Assistance Services State Plan Option (1915(j)), Demonstration Waivers (1115), and HCBS Waiver Programs (1915(c)). That is change, indeed!
Under self-directed Medicaid services, participants or their representatives have decision-making authority over certain services and manage their services with the assistance of a system of available supports. Self-direction promotes personal choice and control over the delivery of waiver and state plan services, including who provides the services and how services are provided. For example, participants have decision-making authority to recruit, hire, train, and supervise the individuals who furnish their services. The Centers for Medicare & Medicaid Services (CMS) calls this "employer authority." Participants may also have decision-making authority over how the Medicaid funds in a budget are spent. CMS refers to this as "budget authority."
The fundamental aim of most self-direction programs is to give people with disabilities greater control over the services and supports they receive and when, by whom, and how they are delivered. In virtually all instances, however, the increase in personal control is accompanied by requirements that total service costs are not to exceed the costs that a community provider agency would incur in delivering the same array of services and supports. In some instances, the upper limit on self-directed support plans is set at 100 percent of the cost of provider-controlled services and supports; in other programs, a discount factor is applied to self-directed support plan allocations (e.g., 90% of provider agency costs) to be held as a risk pool that can be used by the state or provider agency to meet unanticipated cost increases over the course of the year.
The funding options available to states require a person-centered planning process, an individualized budget and service plan, and provision of information and assistance to support self-direction, such as financial management and support broker services.
Each Medicaid funding authority has different guidelines, however, which vary on which populations can self-direct care and which services can be self-directed. The specific services and supports that can be self-directed depend on the state in which the participant lives.
According to a 2022 Kaiser Family Foundation report , all states that allow self-direction permit individuals to select and dismiss their direct care workers. All states that allow self-direction for HCBS waiver, personal care state plan services, Section 1915 (i), and CFC services also permit individuals to set worker schedules. Allowing individuals to set staff payment rates and/or allocate their service budgets is more common in HCBS waivers. Few states allow individuals to allocate service budgets or set staff payment rates for personal care state plan services, Section 1915 (i) services, or CFC services. Similarly, few states allow individuals to allocate service budgets for personal care state plan services, Section 1915 (i) services, or CFC services.
Most states allow self-directing HCBS recipients to employ their relatives as paid caregivers, but some states do not. Legally responsible relatives may include a spouse, parent, or adult child. Covering more provider types, including relatives, can help to increase access to services that meet daily needs, especially when other providers are not available due to the catastrophic workforce shortage. During the COVID-19 pandemic, states increased self-directed and family caregiving opportunities for HCBS beneficiaries. One of the biggest changes stemming from the pandemic was that nearly all states now allow legally responsible relatives to be paid caregivers, but many of them struggle to navigate the paperwork and complex timelines for keeping their loved one enrolled in self-directed services.
Needed Now: Return to Self-Determination
While the fundamental principles of freedom, choice, and support remain clear, the importance of self-advocacy and self-determination in self-direction is sometimes overlooked.
The reinstatement of rules and policies following the end of the pandemic, along with the addition of new ones, prioritize accountability and compliance. These are important and essential in acting as good stewards of the public trust, but they should not diminish an individual’s authority to choose services and providers.
For those who are considering self-direction for their own lives, we recognize that it is a difficult system to navigate, and you need a good support system to help make it work. The important thing is to keep asking questions because this is about you and what you want for your life.
For the disability service field, what is needed now is a return to self-direction’s original values and principles, where services reflect the priorities of the people being served and help them build lives of their own design.
For a tragic few years beginning in March 2020, we saw many of the policies, procedures and regulations that govern HCBS be put aside. People realized how fragile the system of provider-managed services really is, as buildings closed and programs could not operate. They also realized the importance of person- and family-centered thinking and planning. They were reminded that self-directed services can quickly and nimbly respond to the aspirations, preferences, and needs of people with disabilities. People were safer than they were in congregate settings. They learned they had power as they used their services to navigate the system and literally save their own lives.
The fundamental aim… is to give people with disabilities greater control
Moving forward, we must prioritize and standardize these values and include them in policies guiding every state system of self-direction. We must develop or revise policies that clearly prioritize people; increase funding for developing the workforce to support people who self-direct their services; create clear, accessible standards for informing people about self-direction; and build in more system flexibility and local resources so people can use their budget authority to purchase goods and services they need. These policies should be priorities in every state. It should not be so difficult or bureaucratic to buy something from one’s community businesses.
Modernizing regulatory and quality assurance systems will help us better focus on personal outcomes that center wellness through community inclusion. The best safeguard to wellness is in our relationships with others, freely chosen and based on personal preferences. It cannot be found in a list of quality indicators and regulations. Along with this, service monitoring must be more personalized, timely, and transparent, and the role of the support broker must be professionalized in order to provide conflict-free services.
It is essential to include people with disabilities in meaningful ways in all aspects of their planning, managing, and responsibility for their self-directed services and supports. To do so, we must all presume competence, honor their and their families’ decisions about supported decision-making, and recognize their inherent rights as human beings to control their own destinies.