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How Medicaid Self-Directed Care Program Options Empower Families

Discover Medicaid self-directed care programs—empowering individuals to manage their long-term care by choosing services & caregivers in order to improve autonomy & support.
Published on
July 26, 2023
Presented by Givers
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Are you a dedicated family caregiver devoted to providing the best care for your aging loved one? Imagine a world where you can tailor their care exactly to unique needs. Picture a system that empowers you with the authority to make decisions and shape the support your family receives. With Medicaid Self-Directed Care Program Options, families are no longer passive recipients but active participants in their loved ones' care journeys.

What is a Medicaid self-directed care program?

Medicaid self-direction, or self-directed care or participant-directed services, is a service delivery model within the Medicaid program that allows eligible individuals more control and autonomy over their care and support services. It empowers Medicaid beneficiaries, typically those with disabilities or chronic health conditions, to direct and manage their services based on their unique needs, preferences, and goals.

In a traditional Medicaid model, the state or a managed care organization typically arranges and provides services to eligible individuals. However, in a self-direction program, the individual receiving Medicaid benefits becomes more involved in decision-making and has greater flexibility in how their services are delivered.

Critical features of Medicaid self-direction may include:

  1. Person-Centered Planning: Self-direction involves a person-centered planning process where the individual, with the help of a representative or support system, identifies their specific needs, goals, and desired outcomes.
  2. Individualized Budget: An individual budget is created based on the person-centered plan, allowing the individual to control a set amount of Medicaid funds. They can use this individual budget to purchase services, hire caregivers, or make other necessary arrangements to meet their unique needs.
  3. Choice of Service Providers: Self-direction often allows individuals to choose their service providers, giving them more flexibility in selecting caregivers or support staff who best fit their preferences and requirements.
  4. Service and Support Flexibility: The individual has greater flexibility in deciding how and when their services are delivered, enabling them to tailor their care to their daily routines and preferences.
  5. Contingency Planning: Self-direction programs typically include contingency planning to address unexpected events or gaps in service provision, ensuring that the individual's care needs are consistently met.
  6. Supports and Assistance: Medicaid self-direction provides access to various supports and assistance, such as information, counseling, training, and financial management services, to help individuals manage their self-directed care effectively.

These guidelines aim to ensure that Medicaid beneficiaries have more control over their care and plan services, promoting personal choice and empowerment in managing their health and well-being while remaining in their community.

Specific details and implementation of self-direction options may vary among states based on the Medicaid funding authority and state-specific regulations.

Self-direction options

States can choose from various options available under the state plan and waivers to offer Medicaid enrollees the opportunity for self-directing their services.

Home and Community-Based Services (HCBS) State Plan Option

The Home and Community-Based Services (HCBS) State Plan Option is a great program that allows individuals to control their care. This option will enable participants to choose their preferred service providers, ensuring their care is tailored to their unique preferences and needs. With the HCBS State Plan Option, individuals can rest assured that their care is in good hands and that their voices are being heard.

Community First Choice

If you or someone you know needs help with daily tasks, Community First Choice (CFC) can give you more control over your care. This program focuses on services in your community, so you can stay home and get the help you need.

Self-Directed Personal Assistance Services State Plan Option

The State Plan Option for Self-Directed Personal Assistance Services (PAS) allows people to manage their personal assistance services, meaning they can choose who provides the care and ensure it is customized to their needs, including recruiting, training, supervising, and even hiring the people providing it.

Home and Community-Based Services Waiver Programs

Home and Community-Based Services (HCBS) Waiver Programs provide individuals with waivers to receive waiver services outside of institutional settings. These programs allow participants to design care plans, choosing the services and support that best suit their needs.

Explore all waiver programs with a self-direction option >>

How to apply to a self-directed care program

Suppose you or a loved one is seeking a way to receive personalized care tailored to your unique needs and preferences. In that case, the person-centered planning process is a great option. This process is at the core of self-directed services. It is directed by the individual and their family, with the assistance of a representative if necessary.

This process identifies strengths, capacities, preferences, and needs to ensure the care plan is personalized and effective. Additionally, contingency planning is implemented to address any potential service disruptions. Self-directed services allow you to control your care and maintain independence while receiving help and support.

To begin, generally, you will follow these steps regardless of the program you choose:

The process of applying to a Medicaid self-directed care program may vary slightly depending on the state you reside in, as each state administers its Medicaid program independently. However, common steps are typically involved in applying for a self-directed care program. Here's a general overview of the process:

  1. Determine eligibility: The first step is determining if you or your loved one meets the Medicaid self-directed care program eligibility criteria. Eligibility is usually based on age, disability status, income, and functional need for long-term care services.
  2. Contact Medicaid office: Contact your state's Medicaid office to inquire about the availability of self-directed care programs and their specific eligibility requirements. You can find the contact information on your state's official Medicaid website or the Medicaid helpline.
  3. Complete an application: Obtain the application form for the self-directed care program from your state's Medicaid office. You can download the form from their website or request it by mail.
  4. Gather required documentation: The application may require various supporting documents, such as proof of identity, proof of citizenship or residency, medical records, and financial documents. Ensure you gather all the necessary paperwork to submit along with your application.
  5. Assessment and care plan: Sometimes, a healthcare professional or social worker will evaluate the individual's specific care needs. This assessment helps create a care plan outlining the necessary services and supports.
  6. Develop a budget and plan: For self-directed care programs, you or your loved one may be allocated an individual budget to purchase eligible services and supports. Work with a case manager or support coordinator to develop a care plan that fits the individual's needs and adheres to the program guidelines. Sometimes the care plan is called an Individual Service Plan (ISP), Individualized Education Program (IEP), Person-Centered Plan (PCP), or Support Plan. Regardless of the specific terminology, the core purpose of these plans remains the same: to provide a comprehensive and individualized roadmap for meeting the needs and achieving the goals of the person receiving care or services.
  7. Select a service provider: Depending on the program, you may have the flexibility to choose your caregivers or service providers. This could include family members, friends, or hired caregivers. Ensure that the selected providers meet the program's qualifications or training requirements.
  8. Attend training (if required): Some states may require caregivers or participants to attend training sessions on program rules, individual budget management, and other relevant topics.
  9. Submit the application: Complete the application form and attach all necessary documentation. Apply to the appropriate Medicaid office either by mail, in person, or through an online portal if available.
  10. Wait for approval: The Medicaid office will review your application, and if everything is in order, they will notify you of your acceptance into the self-directed care program. Be patient during the process, as this may take some time.

Once approved, you can use the allocated budget to purchase approved services and supports as outlined in your care plan. Remember to keep track of expenses and follow any reporting requirements specified by the program. If you have questions or need assistance during the application process, don't hesitate to contact your state's Medicaid office or a local Medicaid support organization.

Information and assistance in support of self-direction

States must help people who receive care make their own decisions and take control of their care. They must provide information and support to create a plan for personal services and budget, manage workers and services, and meet all the responsibilities of an employer.

Caregivers can access counseling, training, and financial management services to facilitate self-direction. Additionally, an independent advocacy system is available to provide further support.

Support broker or counselor

If you choose to direct your care through Medicaid, you can work with a support broker (or counselor) to help navigate the process. They will be your go-between with the program and can help you determine what kind of help you need and who can provide it. The support broker will work for you and take direction from you.

Financial management services

If you need help managing money for care services, Financial Management Services (FMS) can assist you. They can help you understand bills and paperwork, handle payroll and employer duties, ensure your loved one buys approved items and services, keep track of spending, and alert you if spending is too much or too little. You can do these tasks yourself or have FMS do them for you.

History of Medicaid self-directed care options

The history of Medicaid self-directed care options can be traced back to the 1990s when efforts to empower individuals with disabilities and chronic illnesses to have more control over their care and support services began to gain momentum.

Here is a timeline of key developments:

  1. 1990s - Consumer-Directed Personal Care Services: In the 1990s, some states started offering "consumer-directed" personal care services under the optional state plan personal care services benefit (section 1905(a)(24) of the Social Security Act). This early initiative laid the foundation for the broader self-direction concept.
  2. Mid-1990s - Self-Determination Programs: The Robert Wood Johnson Foundation (RWJF) funded grants in the mid-1990s to develop "Self-Determination" programs in 19 states. Self-direction of Medicaid services was a critical component of these programs, which aimed to give beneficiaries more control over their care.
  3. Late 1990s - Cash and Counseling: In the late 1990s, the RWJF funded grants for the "Cash and Counseling" (C&C) national demonstration and evaluation project in three states. These projects became demonstration programs under the section 1115 authority of the Social Security Act. Cash and Counseling allowed beneficiaries to receive a cash allowance to spend on necessary services, promoting flexibility and autonomy.
  4. 2005 - Deficit Reduction Act (DRA): The DRA, passed in 2005, authorized two additional avenues for states to offer the self-direction option: section 1915(i) and section 1915(j) of the Social Security Act. These sections allowed states to develop Home and Community-Based Services (HCBS) waiver programs that included self-directed care options.
  5. 2010 - Affordable Care Act (ACA): The ACA, signed into law in 2010, authorized section 1915(k) of the Social Security Act. This section allowed states to offer self-directed services to individuals enrolled in Medicaid through the Community First Choice Option. The goal was to promote community-based care and give people more control over their services.

The history of Medicaid self-directed care options shows a growing recognition of the importance of person-centered care and individual choice in providing long-term services and support. These initiatives have aimed to empower beneficiaries to live more independently and tailor their care according to their unique needs and preferences.

Finding the right self-directed care program

State Medicaid agencies must have a system to ensure that their care is high quality, involving identifying and fixing problems and finding ways to improve the system overall. The agencies track how well the system works and how well individuals do.

Choosing the right Medicaid Self-Directed Care Program for an aging loved one can feel overwhelming. Still, with helpful tips, family caregivers can make an informed decision. Firstly, they should consider the specific needs and preferences of their loved ones. Then, they can research different program options, comparing their services, flexibility, and support.

Seeking guidance from healthcare professionals and other caregivers can also provide valuable insights. By carefully evaluating these factors, family caregivers can choose a program that promotes their loved one's well-being and independence.

A note from Givers

Self-directed Medicaid services allow family caregivers to empower their care recipients, allowing them to take charge of their care and support services. By understanding the options, guidelines, and support available, family caregivers can navigate the self-direction process with confidence, enhancing the well-being and autonomy of their loved ones. Embracing this alternative approach to care can genuinely transform the lives of care recipients and their families, fostering independence, choice, and dignity.


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