Emergency Preparation for People with IDD Goes Beyond Having a Go-Bag

Families with individuals who have Intellectual and Developmental Disabilities (IDD) often have plans in place for natural disasters. Wildfires, earthquakes, and flooding are common concerns across Washington. Yet there are other, more mundane emergencies that also need to be planned for. Emergencies happen in almost every home at one time or another. If the emergency is with the individual with a disability, there are often procedures in place with the household as to how to proceed. These include having a go-bag, having a list of diagnosis, medications, and medical history on hand. But emergencies are not also so straightforward, yet it is still possible to prepare for them.

Sometimes the individual with a disability is alone when an emergency occurs, or the caregiver is incapacitated, with only the person with a disability around to help.  Under these stressful situations, many people will panic and be unable to help themselves or others, and those with and IDD are even more likely to react poorly to an emergency situation. One option is to have a personal emergency response system (PERS), sometimes known as medical alert system, for both the individual with an IDD and their main caregivers. This will allow for non-verbal communication with emergency services when the person with an IDD or a caregiver is having a medical emergency.  PERS are available to those on the Community First Choice Medicaid waiver and can otherwise be purchased by anyone.

Preparation is key to heading off potential disasters when emergencies happen. Experts recommend talking regularly to loved ones with IDD about how to deal with an emergency situation.  This can include discussing the importance of listening and following directions of caregivers and first responders. It can also take the form of drills, in the guise of make-believe.  Storytelling can be a wonderfully effective way of getting the message across, and several picture books are available to help children understand how to behave in an emergency.

First responders are increasingly being taught about how to deal with individuals with intellectual and developmental disabilities, but first responders displaying this knowledge cannot be counted on in an emergency. Individuals with IDD are more likely to be comfortable with first responders if they have interacted with them in the past in a comfortable environment.  Community events often have meet-and-greets with police or firefighters, which can be a fun place to introduce children to emergency personnel.  If the individual with a disability is able to regularly visit with first responders, they will be more likely to have a positive reaction to them during an emergency.

Washington State started issuing updated ID cards in 2022, which can now show that an individual has a developmental disability, is deaf or hard of hearing, or has another medical condition.  Not only will first responders be able to see an individual’s important medical information on their ID card, having the card will allow most law enforcement departments to see these designations when they look up individuals in the Department of Licensing system. These new ID cards can help first responders recognize that a person has a disability and act accordingly.

Primary caregivers can enlist the help of nearby friends and family in their emergency planning and can be recruited as an emergency caregiver.  Emergency caregivers need to be someone who is nearby, trustworthy, easily reachable, and has knowledge as to what the person with a disability needs to stay safe and cared for. They can be put on speed dial and the individual with an IDD can be taught how to contact them in emergencies.

Developmental Disabilities Administration Annual Quality Assurance Report

It is now possible to view Putting Vision into Action: Annual Quality Assurance Report from the Department of Social and Health Services’ Developmental Disabilities Administration for Fiscal Year 2022: July 1, 2021 through June 30, 2022. The report shares data on services that they provide and those they support. The report is a good insight as to what the DDA does in the community and their outcomes.

‘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)