‘Impending Intergenerational Crisis’: Americans With Disabilities Lack Long-Term Care Plans

Thinking about the future makes Courtney Johnson nervous.

The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access a complex network of social services, she lives relatively independently in Johnson City, Tennessee.

“If something happens to them, I’m not certain what would happen to me, especially because I have difficulty with navigating things that require more red tape,” she said.

Johnson said she hasn’t made plans that would ensure she receives the same level of support in the future. She especially worries about being taken advantage of or being physically harmed if her family and friends can’t help her — experiences she’s had in the past.

“I like being able to know what to expect, and thinking about the future is a bit terrifying to me,” she said.

Johnson’s situation isn’t unique.

Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.

Read the full article from KHN.

Developmental Disabilities Administration Update May 25, 2021

On May 18, Governor Inslee signed the 2021-2023 biennial budget (Senate Bill 5092) into law. We are pleased to see the governor’s continued support for services and supports for individuals with developmental and intellectual disabilities.

The governor vetoed Section 738 of SB 5092 that directed the Office of Financial Management to spend nearly $143 million toward expanding Home and Community Based Services by leveraging a year of additional enhanced federal Medicaid matching funds. The veto will enable the 2022 state Legislature to decide how the funds should be used.

I am pleased to provide the 2021-2023 biennial budget highlights below:

  • Increased capacity in each of DDA’s five waivers – Funding is provided to add 923 slots on the Individual and Family Services waiver, 100 slots for Children’s In-Home Intensive Behavioral Supports, 467 slots for the Basic Plus waiver, three slots to Community Protection waiver and 159 slots for the Core waiver. ($67.2M total funds; $30.9M GF-State; 37.4 FTE)
  • Remote Technology Support – Funding is provided for DDA to purchase approximately 4,394 devices to distribute to DDA clients and contracted providers, to help them use services remotely during the COVID-19 pandemic. ($3.8M total funds; $1.5M GF-State)
  • Child Welfare for DD Foster Care Youth – Funding is provided to implement Second Substitute House Bill 1061 (child welfare/developmental disability), which adds a shared planning meeting for dependent youth who may be eligible for DDA services after transitioning to adulthood. ($1.3M total funds; $824,000 GF-State; 5.7 FTE)
  • Children’s State-Operated Living Alternative (SOLA) homes – Funding and staffing are provided for four new homes to serve a total of 12 children and youth age 20 and younger by June 2023. ($9.7M total funds; $4.6M GF-State; 46.8 FTE)
  • Dan Thompson Community Investments – State funds offset by receipt of the enhanced federal match through the American Rescue Plan Act will be reinvested one-time in community services for those with intellectual and developmental disabilities. ($50M total funds)
  • Medicaid Provider Collective Bargaining: Multiple bargaining agreements have been funded:
    • SEIU 775 – Representing Individual Provider homecare workers. ($28.3M total funds; $11.6M GF-State)
    • Homecare Agencies – Parity with Individual Providers. ($3.1M Total Funds; $1.3M GF-State)
    • Adult Family Home Council – Representing AFH owners. ($3.3M Total Funds; $1.4M GF-State)
  • Temporary Provider Rate Increases – through December 2021, current rate add-ons remain in effect. ($65.1M total funds; $18.7M GF-State)
  • Enhance Community Residential Rate – Rates for supported living and other community residential service providers are increased by 2% effective January 1, 2022, and by an additional 2% effective January 1, 2023. ($30.2M total funds; $14.9M GF-State)
  • PASRR Capacity Increase – Pre-admission Screening and Resident Review services are an entitlement for individuals with intellectual or developmental disabilities in nursing facilities. A current and projected increase in the caseload and per capita costs is in the budget. ($4.3M total funds; $1.8M GF-State)
  • Community Residential Options – Additional five, three-bedroom SOLA homes for adults; 12 additional clients in contracted supported living settings; and four beds in Adult Family Homes to expand community residential options for those with intellectual and developmental disabilities by the end of June 2023. ($10.3M total funds; $4.8M GF-State; 47.5 FTE)
  • Field Staff Vacancies – Through FY 2021, staff hiring has not kept pace with budget additions. As a result, ongoing funding and staffing reductions made in the 2021 supplemental budget to align more closely with actual experience are continued. (-$5.9M total funds; -$2.9M GF-State; -30.9 FTE)
  • Fircrest Nursing Facility – The design of a new 120-bed nursing facility on the Fircrest campus is funded as preparation for future construction. ($7.8M GF-State)
  • Residential Habilitation Center Fire Alarms – New fire alarms at Rainier and Fircrest schools (as well as Western State Hospital). ($5.0M GF-State)