Government Support

No single, comprehensive law requires the U.S. government to have a process that automatically offers care and protection to a neurodivergent individual (adult or child) should they lose their parents or primary caregivers in the event of their death. Instead, they can offer federal support to state-run programs and legal mechanisms, such as handling conservatorship matters.

In California, when a person with developmental disabilities loses their parents, the state provides a comprehensive system of services to ensure their continued care and support. These services are primarily administered through the California Department of Developmental Services (DDS) and delivered by 21 regional centers across the state.

California's system is designed to provide comprehensive support to individuals with developmental disabilities, ensuring they continue to receive necessary services and live fulfilling lives, even after the loss of their parents.

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Key Services and Supports Provided by the State

1. Eligibility and Service Access

• Lanterman Developmental Disabilities Services Act: Individuals with developmental disabilities have the right to receive services and support to achieve their goals, regardless of age or the degree of the disability. This entitlement ensures that eligible individuals receive necessary services even after the loss of their parents.

2. Regional Centers (nonprofit organizations contracted by Developmental Disabilities Services, or DDS)

• Role: To provide services to individuals with developmental disabilities. They offer case management, service coordination, and connect individuals to community-based services. Each regional center operates within a specific geographic area.

• Services Offered:

  • Assessment of needs and development of individual service plans.

  • Coordination of services such as housing, employment, and healthcare.

  • Assistance with navigating public benefits and legal matters.

  • Support in accessing community integration and social inclusion programs. 

3. Conservatorship

• Limited Conservatorship: If the individual was under the care of their parents, a limited conservatorship may be necessary. This legal arrangement allows a responsible person to make decisions on behalf of the individual in areas such as healthcare, education, and living arrangements. The court appoints a conservator, who may be a family member, friend, or a public guardian if no suitable person is available. 

4. Housing and Residential Services

• Supported Living Services (SLS): These services assist individuals in living independently in their own homes or apartments, with support tailored to their needs.

• Group Homes: For individuals who require more intensive support, group homes provide 24-hour care in a community-based setting.

• Adult Residential Facilities: These facilities offer housing and care for adults with developmental disabilities who need assistance with daily living activities.

5. Financial and Legal Planning

• Special Needs Trusts (SNTs): To preserve eligibility for public benefits like SSI and Medi-CAL, parents often establish SNTs. These trusts manage assets on behalf of the individual without affecting their eligibility for government assistance. 

• Public Benefits/Disability Rights:

  • Supplemental Security Income (SSI): A federal income supplement program funded by general tax revenues, providing financial assistance to individuals with disabilities.

  • Medi-CAL: California's Medicaid program, offering health coverage to eligible individuals.

TIP: regularly review your financial plans and legal documents as external or internal factors could change on a year-by-year basis.

6. Employment and Day Programs

• California Department of Rehabilitation (DOR): DOR provides vocational rehabilitation services to help individuals with disabilities obtain and maintain employment. Services include job training, placement assistance, and support in the workplace. 

• Day Programs: These programs offer structured activities and services during the day, focusing on skill development, socialization, and community involvement. These are restricted by the individual’s nearest regional center.  

7. In-Home Supportive Services (IHSS)

• IHSS Program: Provides personal care services to individuals who are aged, blind, or disabled, allowing them to remain safely in their own homes. Services can include assistance with bathing, dressing, and meal preparation.

No, single comprehensive law requires the local government in the United States to help neurodivergent individuals whose parents died. But, there are local agencies that could offer support that are protected by several federal laws and programs, such as the Americans with Disabilities Act (ADA, 1990), Fair Housing Act, and more.

Local government will act when:

• Someone advocates for the individual (e.g., social workers, family, public guardians).

• The individual is eligible to receive support from state/federal programs.

• The individual's legal status (i.e., under conservatorship) is approved.