Saturday, June 16, 2018

Gaps in long-term community supports

  • Tucked into a report about increased community supports is a sub-narrative about people not well-supported by Washington

A new study shows nationwide investments in long-term community care are up. The same holds true for Washington, with a caveat:

Overall, Washington is investing more in Medicaid, and more in its long-term supports and services. But while investments in community living for older adults and people with physical disabilities are up, investments in community-based services specific to developmental disabilities fell 16 percent between 2015 and 2016.

At the same time, Medicaid spending for institutional care for people with intellectual disabilities shot up 65 percent, while investments in long-term, community-based behavioral health services for people with mental health disorders remained zero.

The shift in community spending partially reflects Washington’s relatively new Community First Choice, a Medicaid option for attendant care that benefits people with a variety of disabilities. Some support for daily living that was provided in developmental disability waivers moved to this option.

But as those costs shifted out, there was no corresponding increase to community supports specific to developmental disability, such as residential, behavioral, and crisis supports. Instead, investment went to intermediate care facilities, housed in Washington’s remaining institutions for people with developmental disabilities.

How we rank

For people with certain health conditions, Washington offers several long-term care options in community settings. Not so much for others.

Most people associate Medicaid with free or low-cost preventive care and medical treatment for people with low incomes, children and pregnant women. In Washington, this aspect of Medicaid is our Apple Health program.

But Medicaid also pays for long term services and supports. These include a range of supports for people with physical, cognitive, or mental disabilities. These supports, in turn, are divided into two aspects:
  • Institutional care - such as nursing facilities or intermediate care facilities for individuals with intellectual disabilities, and
  • Home and community-based services. Services offered through the state Developmental Disability Administration fall into this category, such as the Basic Plus, Core, Children’s Intensive In-Home Behavior Supports (CIIBS), and Community Protection “waivers.”

    (“Waivers” are called that because Medicaid presumes long-term care will take place in an institutional setting. When people opt for support through home and community based services, they are “waiving” a spot in an institution.)
To compare states, the study divided funding levels by number of state residents, using the July 2016 Census estimate. Then it ranked them by investment level per resident.

Turns out, Washington doesn’t spend a lot, comparatively, on long term supports. In 2016, on a per resident ranking, we came in at 31st. Washington puts more resources into Apple Health, and on overall Medicaid spending we ranked 23rd.

Investing in Apple Health absolutely benefits the developmental disability community. Many people with developmental disabilities – especially adults – rely on Medicaid for doctor visits. And, when Washington expanded Medicaid under the Affordable Care Act, many care taker families became eligible.

But spending in long-term supports tells another story.

Less spending on developmental disabilities, overall:

  • When you break out spending on long term supports for people with developmental disabilities, Washington falls to 35th. (From 31st overall)

Less spending on community supports specific to developmental disabilities:

  • When you look at long-term supports going into community care for older adults and people with physical disabilities, Washington ranks third. 
  • When you look at long-term supports going into community care specifically for developmental disabilities, Washington ranks 37th.

Zero community supports for people with mental health disorders:

  • Washington doesn’t use Medicaid to invest in long-term community care for people with mental health disorders. We rank 50th.

New investment in institutions – but only for intellectual disabilities:

  • When you look at long-term support spending going into institutions you see the trends flipped. Nationwide, institutional spending remained flat. And overall, Washington ranked 35th on long-term institutional care spending. Generally, we invest more in community supports.

    Except when it comes to institutional care for people with an intellectual disability, a type of developmental disability. In that category, we jumped to 14th. U.S. spending per resident on this type of care is $1,799. Washington’s spending per resident is $2,682.

    Compared to other states and when measuring by per resident expenditure, we are spending a lot more on institutional care for people with intellectual and developmental disabilities. We spent an additional $77,223,186 in 2016 – a 65 percent increase – on a model the rest of the nation is pulling away from and which serves about 700 people in Washington.

State refuses to forecast for developmental disabilities

In 2016, more than 40,000 people with intellectual and developmental disabilities qualified for an institutional level of care. They opted for care in the community, but the state boosted investments in institutions, even though less than two percent of people qualifying for long-term developmental disability supports get care in institutions.

Many are aging and living with aging caretakers, but the state did not invest in additional slots for residential supports.

Many have a dual mental health diagnosis and need specialized care to avoid crisis, but the state does not track its services to ensure the type of support needed is available.

The state has a caseload forecasting council. But when it comes to spending on long-term supports, the state ONLY forecasts for older adults. It excludes people with developmental disabilities.

The state doesn’t have a mechanism to show how effective its approaches are, or whether people are accessing the services they need. This means the state can’t assess where investments in long term supports make the most sense.

How does this play out?

No increase in slots for waivers like the Core, which gives people access to residential care. The silver tsunami affects the developmental disability community, too, but aging caretakers are not getting much support and don’t know where their loved ones will live when they can’t care for them.

Other fallout: Inadequate investment in crisis support. Scarcity of day services beyond employment support. Inadequate compensation for individual providers. Service gaps for people with autism.

In sum, the issues we hear about mostly go unresolved, and emerging issues aren’t flagged in a systemic way.

Dual diagnosis: The most under-served?

When looking at investments in long-term supports, two areas stand out for Washington:
  • There aren’t a lot of supports specifically tailored to behavior or sensory issues, and 
  • There are none for mental health disorders.
The frequency of dual diagnosis of developmental disabilities and mental health problems is estimated to be 30 to 35 percent by many professionals, making the lack of investment in long-term supports for this subgroup worrisome. Supports can include habilitation and education, social skills training, residential services, and crisis intervention services, along with psychotherapy and behavior therapies.

At the same time, people with a dual diagnosis (or suspected one) struggle to find mental health services through Apple Health or private insurance. Many mental health providers don’t take clients with developmental disabilities, and crisis care is extremely difficult to access, especially in the community, near a person’s natural supports.

In a state that mostly invests in community living and community care over institutional care, we see glaring omissions when it comes to intellectual disability, and with the intersection of developmental disabilities and mental health.

- Ramona Hattendorf, Director of Advocacy, The Arc of King County