4 New Resources to Help State Medicaid and Partner Agencies

As family members who care for individuals with developmental or intellectual disabilities (I/DD) age, there is an increasing need to support aging caregivers. Family members may need to plan for their loved one’s future or access state Medicare or Medicaid services for themselves. In response to this concern, the Centers for Medicare and Medicaid Services (CMS) has created four valuable resources to help state Medicaid programs and collaborating agencies meet the growing needs of individuals with I/DD and their families. Direct Care Innovations would like to share how these new resources assist state Medicaid services, partner agencies, and caregivers of individuals with I/DD.

1. Anticipate Current & Future Needs

States need to discover the current needs of people with I/DD and their families before they can begin to anticipate their future needs. Collecting and analyzing several data points related to these needs, such as level of support needs, unique considerations of underrepresented communities, and age and health status of caregivers, can provide valuable insights, such as:

• Future service needs
• Underserved populations
• Family emergencies
• Life transitions

2. Design Supportive Policies & Practices 

As caregivers age, they may qualify for state Medicaid and Medicare services. These services benefit family members with I/DD as their parents often keep them active in the community, understand their communication styles, and provide the stability they need to thrive and grow. Some policies and practices that may support parents of adult children with I/DD include:

• Access to federal initiatives such as National Family Caregiver Support Program or Lifespan Respite Care Programs
• Collaboration with support groups for family caregivers of individuals with I/DD and offer services such as lifespan planning, caregiver training, or counseling
• Access to available caregiver services and support within their local communities
• Identification and careful planning of how to serve family members with I/DD when their caregivers can no longer provide as much support

3. Promote Person-Centered Planning

Caregivers may need to rely more on home and community-based services when they can no longer take on as much caregiving responsibility. A person-centered approach to planning for this type of future need is key to effectively making this major transition smooth and simple for both the caregiver and the individual with I/DD. CMS encourages state and community agencies to utilize this holistic approach by considering these four areas:

• Focus on the person with I/DD, ensuring they are heard and valued and the services they receive align with their wishes. 
• Allow them to choose services and supports based on their well-being and life goals.
• Ensure family members with I/DD can participate and be active in their communities.
• Provide access to individualized services that address their particular needs.

4. Learn from Current State Strategies 

Many states practice some of these strategies and successfully provide for the needs of caregivers and family members with I/DD. A few of the strategies currently being used include:

• Providing family-centered services and support by facilitating collaboration among Medicaid programs and various agencies
• Utilizing regular planning sessions to understand the specific goals of their local community and implement strategies that can best serve families who support individuals with I/DD
• Gathering feedback and advice from individuals, families, and caregivers on how to ensure that services and supports directly respond to the needs of families with I/DD

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