Self-Determination Programs

What Is Self-Determination?

Self-determination is a philosophy and a program model that shifts power from government agencies and service providers to the person with a disability and their family. Instead of being assigned a provider and told what services you can receive, self-determination gives you an individual budget and the authority to spend it on services that meet your specific needs.

The concept emerged from the disability rights movement's core principle: "Nothing about us without us." Under traditional service delivery, a case manager decides which provider agency serves you, what hours you receive, and what activities are covered. Under self-determination, you make those decisions. You can hire your own staff, including family members in many states. You can purchase goods and services that traditional programs would never cover, as long as they relate to your goals.

Self-determination programs operate within the Medicaid Home and Community-Based Services (HCBS) waiver framework. The federal government allows states to offer participant-directed options under Section 1915(c) and 1915(j) waivers. This means the funding comes from the same Medicaid dollars as traditional waiver services, but you control how those dollars are spent.

How Self-Determination Works

The process typically follows these steps:

1. Person-Centered Planning: You work with a facilitator (of your choosing) to develop a person-centered plan that identifies your goals, preferences, and the supports you need to achieve them. This is different from a traditional service plan because it starts with your vision for your life, not a menu of available services.
2. Individual Budget Allocation: Based on your assessed needs, you receive an individual budget. This budget represents the total Medicaid funding available for your services. You know exactly how much you have to work with, which creates transparency that does not exist in traditional programs where the agency controls spending.
3. Spending Plan: You create a spending plan that details how you will use your budget to achieve your goals. This plan must be approved by the state agency, but you have wide latitude in how you allocate funds.
4. Financial Management Service (FMS): A fiscal intermediary handles payroll, taxes, and billing so you do not have to manage those administrative burdens yourself. The FMS ensures your spending stays within your budget and complies with Medicaid requirements.
5. Independent Facilitator: You choose an independent facilitator who helps you navigate the program, develop your plan, and resolve issues. Unlike a traditional case manager who works for the agency, your facilitator works for you.

Which States Offer Self-Determination?

Self-determination availability varies widely by state. Some states have mature, well-funded programs. Others offer limited participant direction within existing waivers. Key states include:

• California: The Self-Determination Program (SDP) launched statewide in 2021 after years of pilot programs. It is administered through the regional center system. See our California Deep Dive for details.
• Michigan: One of the earliest and most robust self-determination programs in the country, operating since the late 1990s.
• New York: Offers self-direction within its HCBS waiver programs, including both budget authority and employer authority models.
• Texas: Consumer Directed Services (CDS) option allows participants to hire and manage their own attendants under several waiver programs.
• Florida: The Consumer-Directed Care Plus (CDC+) program allows participants in the iBudget waiver to self-direct their services.
• Oregon, Washington, Colorado, Minnesota: Each offers some form of participant direction within their HCBS waiver programs, though the scope and flexibility vary.

Contact your state's developmental disability agency to find out what participant-directed options are available. Even in states without a formal self-determination program, you may have some ability to direct parts of your services.

Benefits of Self-Determination

• Choice and control: You pick your providers, set your schedule, and decide what services to prioritize.
• Flexibility: Funds can often be used for creative supports that traditional programs do not cover, such as gym memberships for health goals, technology for communication, or community classes for socialization.
• Hire family members: In many states, you can pay family members (excluding spouses and, in some states, parents of minors) to provide direct support services.
• Cost savings: Research consistently shows that self-determination programs cost the same or less than traditional services while producing better outcomes in quality of life, community integration, and satisfaction.
• Continuity: Because you hire your own staff, you avoid the constant turnover that plagues agency-based services. Your support workers know you and your routines.

How to Enroll

Eligibility for self-determination programs generally requires that you are already receiving or eligible for Medicaid HCBS waiver services. The enrollment process typically involves:

1. Confirming you are on an active HCBS waiver or waiver waiting list (some states allow enrollment from the waiting list).
2. Attending an orientation session about self-determination.
3. Selecting an independent facilitator and a financial management service.
4. Completing a person-centered planning process to develop your individual plan.
5. Getting your individual budget calculated based on your assessed needs.
6. Submitting your spending plan for approval by the state agency.

The entire enrollment process can take several months. Start by contacting your case manager or state developmental disability agency to express interest.