Services in short supply

It's a phrase often heard in the world of developmental disabilities: There are the "haves" and the "have nots." Two people might have the same disorder and the same symptoms but receive vastly different services, experts say.

In Washington and throughout the country, thousands of people are on waiting lists to receive even the most basic services, such as wheelchair modifications to a home or help in paying for therapy. Thousands more are waiting for more extensive services, such as round-the-clock care. And there are untold numbers of people with developmental disabilities that state and federal agencies don't even know about.

Many programs for people with developmental disabilities, it turns out, are not entitlements but serve only the number of people that the state budget allows.

For adults, income, resources and the level of disability are all considered, said Nancy Meltzer, who works with older families through The Arc of King County. But other factors play a role.

"It takes hard work and good luck," she said.

That leaves many people to either go it alone or rely on help from family or friends.

Of the estimated 111,000 people in Washington who meet the federal definition of developmental disabilities, only about 37,000 are on the rolls of the state Division of Developmental Disabilities (DDD). Because they are often low-income, most adults with developmental disabilities qualify for health care through Medicaid.

But not all people with developmental disabilities are receiving services beyond that. According to a recent report, about 15,000 of them receive no services during any given month, other than what's called "case management." Case managers might hand out lists of local resources but provide not much more than that because of their large caseloads and funding constraints. About 11,000 people with developmental disabilities consistently receive no paid services.

Many of those not receiving services are on one of numerous waiting lists or databases that DDD maintains. Some people remain on the lists for years.

Money, of course, is the problem. There are two basic funding sources: state-only money, or the Home and Community Based Waiver (HCB), which is funded with state and federal money.

State-only money covers programs such as job training and family support, which includes things such as a part-time caregiver — ranging from a few hours a week to more than 40 hours. It also covers respite care so that caregivers can take a break.

Nearly 10,000 people in Washington are on the family-support waiting list. Only 443 receive the service.

The other option is the waiver, which is funded jointly by state and federal governments through the Medicaid program. Waivers are generally reserved for those needing more intensive support. There are four levels of waivers, offering help ranging from employment support to round-the-clock care.

Before the late 1990s, Medicaid waivers were more widely available. But since changes were made to the program several years ago, the need vastly exceeds the availability. Today, about 9,400 state residents are on Medicaid waivers and nearly 700 are on a waiting list.

DDD tries to set priorities so those who need the most help receive it first, according to Linda Rolfe, director of DDD. However, in many cases there is little difference between those with a waiver and those without, Meltzer said.

Sometimes, families feel that getting off the waiting list and onto a waiver takes a crisis. For example, if a family caregiver is hospitalized and can no longer provide support, the case manager may request a waiver slot. The Legislature recently set aside funds specifically for aging caregivers so those families have a leg up, Rolfe said.