Wednesday, April 7, 2021

BIG disappointment for DD advocates

Key developmental disability bill stalls in House Appropriations. Would have gathered data needed to fix funding levels for DDA services


Developmental Disability Administration (DDA) waiver services in Washington state are capped. And every year, state legislators - your representatives - decide how many slots to offer. They do this without a courtesy caseload forecast to inform them about level of need. The budget process they use looks at the small number of people already served, and even then it is limited. For instance, the legislature does not consider what services people want but cannot access, either because they aren't on the right waiver or because they can't find a provider.

Legislators do not consider the equity implications for those never let in, or who spend years waiting. They do not consider the economic impact of their decisions on families and the larger community.

SB 5268 - sponsored by Senators Karen Keiser, John Braun, and Joe Nguyen - is important for fixing this. The bill is titled: Transforming services for individuals with intellectual and developmental disabilities by increasing the capabilities of community residential settings and redesigning the long-term nature of intermediate care facilities.

SB 5268 would help the state understand where investment was needed for DDA community supports. It passed the Senate unanimously and sailed through the Housing, Human Services & Veterans Committee in the House. There was strong, bipartisan support.

Then it hit House Appropriations, where it died.

Fourteen of the 33 members on the Appropriations Committee represent parts of King County. So this is disappointing. Our local legislators do not understand the impact their policy choices have on their constituents with I/DD and their families. Or they do understand, but do not prioritize action.

If you care about expanding and stabilizing supports in the community, we encourage you to contact your legislators, especially if they are on the Appropriations Committee, to let them know how disappointed you are that SB 5268/DDA services died, and ask for their support going forward.


SB 5268 is about gathering information that the state needs to plan for and fund DDA services appropriately. 

DDA services are Medicaid long-term services for people with intellectual and developmental disabilities (I/DD). There is a federal match with Medicaid, so the more the state invests, the more the federal government invests. Community services are funded through a home- and community-based services (HCBS) waiver. This means people waive the right to receive support in an institution and instead request support in the community.

Currently, we are 39th in the nation in funding for community supports overall for people with intellectual and developmental disabilities, and 41st when it comes to funding HCBS waiver supports for people with I/DD. Less than 30 percent of people who meet the federal definition for needing DD waiver supports get them in our state. Supports that help individuals develop and maintain essential life skills are funded through the DDA waivers. Underfunding them directly impacts the ability of people to live and participate in their community.

The bill was funded in early versions of the Senate budget proposal, but the associated line items do not appear to be part of current budget discussions. Specific items that would now go unfunded include:

  • Courtesy forecasts of those who are assessed as eligible, and have requested services for, the Individual and Family Services (or IFS), Basic Plus, and Core waivers, and supported living services; and to produce a courtesy forecast of the number of individuals expected to reside in State-Operated Living Alternatives.

  • Funding and staffing to examine and report on a variety of topics, including but not limited to, the need for community respite beds and crisis stabilization services; to study Medicaid rates for contracted community residential providers; to develop uniform quality metrics for residential settings; and to establish a staffing plan to achieve a case management ratio of 1:35. Funding is also sufficient for rental assistance for individuals who face eviction caused by the transfer from subsidized housing to an Intermediate Care Facility.

  • Funding to perform a review of practices in other states and identify options to improve the Department of Social and Health Services practices related to client eligibility, services and managing clients.

Recently, the state crafted a plan to stabilize and grow community supports and rethink the way we use intermediate care facilities (ICFs). These facilities, as well as nursing homes for people with I/DD, are located at the state's four Residential Habilitation Centers. Years ago, people moved into RHCs for long-term stays. Medicaid now views ICFs as short-term facilities for active treatment and Washington state is in the process of adapting.

"Habilitative" services help a person keep, learn, or improve skills and functioning for daily living. This is in contrast to "rehabilitative" services, which help a person keep, get back, or improve skills and functioning for daily living that have been lost or impaired due to injury or illness.

Generally, the habilitative supports available through the DDA (commonly called "community supports" or "DD supports") are not available outside the Medicaid HCBS waivers or through private health insurance. If the state under-funds and doesn't pay for enough slots, people who are otherwise eligible simply lose access to them. Currently, there are about 14,000 people on a No Paid Services list. They are eligible for DDA supports but cannot access them because the state has chosen not to fund or track the number of waivers needed.