Intellectual & Developmental Disabilities

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NCI: COVID-Related Challenges for Family Caregivers

Examining NCI data, the NCI team sheds light on some of the challenges that families of people with IDD may be facing during the pandemic and highlights opportunities to strengthen support infrastructure.

Transparent, equitable systems based on individually tailored, self-directed supports

Since 1976, we've been working with self-advocates and families to research effective community-based services and supports for people with intellectual and developmental disabilities (IDD). We've been excited to assist agencies in moving consistently in the direction of higher-quality, more person-driven, self-directed services: 

  • Relocating people with IDD from public institutions into integrated community living options
  • Applying Medicaid waiver funds efficiently and effectively to achieve community-centered policy objectives
  • Expanding community support systems to include public funded services and other complementing resources
  • Growing the availability of practices to support families
  • Expanding quality assurance and improvement systems
  • Supporting the self-advocacy movement
  • Expanding self-directed supports options

We collaborate with national organizations in these efforts, including the National Association of State Directors of Developmental Disabilities Services to support the National Core Indicators – an outcome measurement system that spans nearly all 50 states. We also have longstanding partnerships with the Institute on Community Inclusion at the University of Massachusetts and the Research and Training Center on Community Integration at the University of Minnesota. 

We also assist IDD agencies around the country to allocate resources more efficiently, effectively, and equitably. This process often involves systems changes to alter the services available, rebase reimbursement rates, assess individual support needs, and assign personal supports budgets to each individual.

How can we help?

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