Self-Direction
Empowering Individuals with Disabilities using State Medicaid Waiver Services
In the realm of disability planning and support, the concept of self-direction has gained prominence as a means to enhance the lives of individuals receiving services and supports from a State Medicaid Waiver. Self-direction empowers individuals with disabilities to take an active role in designing and managing their support services, fostering greater autonomy and independence. In this article, I will explore what self-direction entails and evaluate its pros and cons, shedding light on how it can be a game-changer in the realm of disability care.
What is Self-Direction?
Self-direction is a person-centered approach to providing Medicaid-funded Waivers, which allows eligible individuals to have greater control and flexibility over their support services. Unlike traditional service models, where service providers dictate the type and timing of care, self-direction empowers the participant to decide who provides the services, the nature of those services, and when and where they are received.
Under self-direction, individuals receiving support from a Waiver are given a budget allocation, often referred to as a "service budget" or "individual budget." This budget serves as the funding pool for the participant to manage their care. Participants work closely with a support coordinator or facilitator, typically employed by a local agency, who assists them in creating a person-centered plan. The plan outlines the individual's goals, needs, and preferences, and how the budget will be allocated to achieve them.
The budget is determined based on the individual’s level of support needs. According to the National Council on Disability, the budget is determined by a needs assessment process taking into account “an individual’s (1) medical condition(s); (2) functional capabilities and restrictions, specifically the ability to perform activities of daily living (ADLs) and instrumental activities of daily living (IADLs); (3) living arrangements; (4) access to unpaid supports; (5) social environment; and (6) access to required behavioral supports, if required” (emphasis is mine). I will often tell the families I work with to imagine their child’s worst day, and what would have happened if they weren’t around.
Perhaps this sounds “melodramatic”. I don’t mean for it to. The reality is the Medicaid Waiver is meant to fund support for an individual to live “independently”. That means paying for all the support mom and/or dad are providing. In many situations, there will come a time when parents can no longer provide support. To me, this is the worst time to find out the individual does not have enough in place to allow them to continue living the life they’ve grown accustomed to.
The Budget
For those of you who have never worked in finance, or are not familiar with budgets, this is the document that says how much money is available for the individual with disabilities. They are not set in stone, you are allowed to request changes to it. In fact, I encourage you to review your budget before it renews every year. This is the easiest time to make changes.
You’ll want to become very familiar with what your state deems as “reasonable and customary” pay rates. Every state is different. This rate is how much you will be allowed to pay staff. It will provide you with a band, with a minimum amount and maximum amount per hour. Some services may also have a limit on how frequently someone can be paid.
Using Maryland’s Self-Directed Service rates from July 2022 as an example, Community Development’s pay range is $34.53/hour (minimum) to $55.04/hour (maximum) and is limited to “8 hours per day / 40 hours per week with other meaningful day services.
It’s important to pay attention to the salaries you are paying because you have to stay within the boundaries set by your state’s Medicaid. Another thing to keep in mind. Although many states are allowing family members to be paid caregivers, they are also placing limits on how many hours they can work.
You won’t be on your own. Medicaid requires every state to offer Financial Management Services (FMS) to those choosing to self-direct their services. FMS will usually perform payroll and employer-related duties. This includes taking care of employment taxes, processing payroll, and monitoring the budget.
Pros of Self-Direction:
1. Increased Autonomy and Choice: Self-direction puts the individual at the center of the decision-making process, allowing them to choose the services and support that best suit their unique needs and lifestyle. This control fosters a sense of empowerment and dignity, promoting overall well-being.
2. Flexibility and Customization: Participants have the freedom to select their caregivers, whether family members, friends, or hired professionals. They can also tailor the services to their schedules, promoting a more personalized and flexible approach to care.
3. Enhanced Community Integration: Self-direction promotes community-based services, facilitating the participant's integration into their local community. This can lead to increased social engagement, improved relationships, and more fulfilling life outside institutional settings.
4. Empowerment and Skill Development: Managing one's support services can be a valuable learning experience. Participants often develop essential skills in budgeting, decision-making, and negotiating, which can extend beyond the realm of their care and positively impact other aspects of their lives.
Cons of Self-Direction:
1. Administrative Burden: Self-direction requires active involvement in managing paperwork, budgeting, and hiring and training caregivers. This added responsibility may be challenging for individuals who have limited support networks or lack experience in handling administrative tasks.
2. Risk of Isolation: While community integration is a goal of self-direction, some individuals may face challenges in finding appropriate caregivers or may become isolated if their chosen caregivers are not readily available.
3. Limited Provider Options: In some regions, the availability of providers willing to work in a self-directed model might be limited. This could restrict participants' choices and reduce competition among providers.
4. Financial Management Challenges: Some participants may struggle with managing their budgets effectively, potentially leading to underspending or overspending, which could impact the quality and continuity of care.
5. Navigating Complex Regulations: Self-direction involves adherence to various regulations and compliance requirements. Navigating this intricate system may prove challenging for participants and their families.
If you’re a parent thinking of doing self-direction as your child’s legal Guardian (Conservator), please take into account what will happen when you can no longer serve in this role. I would ask you to give the same consideration to serving as your child’s paid caregiver. I have experienced first-hand the difficulty in finding qualified staff, I know the struggle is real.
Yet none of us are going to live forever, and as we age our ability to do some of the more physical caregiving (i.e. transferring) may become more difficult or even impossible. Create a backup plan. Find and train your replacement if you’re doing self-direction. Be ready to hear a sibling say they don’t want to do this for the rest of their lives.
Self-direction offers a promising approach to State Medicaid Waivers, allowing individuals with disabilities to take control of their care and support. By promoting autonomy, flexibility, and community integration, self-direction can greatly enhance the quality of life for participants. However, it is essential to consider the potential challenges, such as administrative burdens and limited provider options, to ensure that self-direction is a viable and successful option for all eligible individuals.
As disability planning experts, it is crucial to provide comprehensive information and support to individuals and their families, empowering them to make informed decisions that align with their unique needs and aspirations. Self-direction has the potential to transform the landscape of disability care, but it is equally important to address the associated pros and cons to create a robust and inclusive support system for everyone.
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