KING 5 Investigates: Washington’s Long Wait List

Published Jun. 5, 2015

KING 5 Investigates: Washington’s Long Wait List

Some disabled wait up to 14 years for state help

The problem was first documented in 1950. That year the state of Washington created a wait list for people with developmental disabilities who needed state assistance and who met the criteria to be deemed eligible. At the launch, the names of 1,000 people were on the list.
Today, 65 years later, there are nearly 15,000 names on the same list. That's how many families have asked for help for their loved one. But instead of getting support, those families were told to fill out paperwork and get in line.

The types of services these families need include:

• Speech therapy
• Occupational therapy
• Physical therapy
• Adaptive equipment
• Transportation
• Medical supplies
• Training and counseling
• Vehicle and home modifications
• Behavior management
• Respite care (caregivers who can take over to give family members much needed breaks)

The KING 5 Investigators found that some families have been waiting for a service for up to 14 years, and that Washington has one of the largest wait lists in the country. Only six states have more people with developmental disabilities waiting for services: Texas, Florida, Pennsylvania, Louisiana, Illinois and Ohio. A quarter of the states in the country have no wait list at all, including Oregon, Idaho, California and Hawaii.

"Not OK. I thought we were a much more progressive state than that. Especially for care in autism, for care in disabilities, period," said Angel Townsend of Kent. She's the mother of twin boys who were both born with an extreme form of autism. The Townsends have lingered on the wait list for nearly seven years.
"It's felt desperate at times," said Townsend.

Advocates for the community say the decades-long problem is a reflection of Washington's lack of a commitment to this vulnerable population.

"We just have not been able to get funding for people," said Margaret-Lee Thompson, one of the state's leading advocates for people with developmental disabilities. "If you are aging, or if you are a foster child, you get services. That's good. That's really good. But that's not the way it is with people with developmental disabilities. Instead they wait. They wait. And many of them go into crisis."

That's exactly what's happened to the Townsends. Angel and George's twin boys, Coit and Andy, are almost 8 years old and have never received a state-paid service outside of school. The twins' challenges are many: Andy can communicate with a few words. Coit has no speech at all. They both have anxiety and sensory processing disorders. Both also have sleep disorders, which requires their parents to get up in the middle of the night and stay awake from that point forward -- a pattern they say happens nearly every night. Both boys engage in what is known as "elopement" -- bolting or wandering away from home or school without regard for traffic, strangers, or getting lost. Angel Townsend said the hardest part is always being on high alert in order to protect her children and make sure their needs are met.

"The persistence of the challenge. It doesn't let up. It's there all of the time, 24-7," she said.

Last year, the Townsends found themselves in full-time crisis that continues to this day. Coit began experiencing pain due to a medical issue. His reaction to the pain included self-injury behavior. He routinely punched himself and banged his head against hard surfaces. It escalated from there. Now, several times a week, Coit breaks into uncontrollable outbursts where he screams, cries and hurts himself and others around him. He's been badly bruised and scratched from self-inflicted punches, given himself a bloody nose and once broke his dad's nose.

"There's only so much I can do and keep myself safe. So we follow a plan to put him in a safe place to thrash in and try to minimize the damage to him," said Angel Townsend. "Sometimes I cry, and it's contributed a lot to my own mental health problems with depression and anxiety."

The number one request for families like the Townsends? A break. Families are desperate for fill-in caregiving, known as respite care, to help keep the parents from burning out.

"For me personally at times it's been brutal," said Angel Townsend. "Mostly emotionally, extremely difficult."

Hope for those waiting

According to a 2013 performance audit by the State Auditor's Office, of the 35,150 people who have applied and were eligible for services, 7,800 received partial services, 12,250 received full services, and 15,100 were on the wait list (a number has since gone down slightly). "..for those who have asked for help but are waiting for services, life is a struggle. Families we spoke to have experienced financial hardships, psychological and emotional stress, and strain on family relationships," wrote the audit authors.

Last year state Sen. Andy Hill (R-Redmond), Chair of the Ways and Means Committee, found a creative way to expand services to a large number of families on the wait list. He plan involved a strategy employed by the state of Oregon – adopting a new program that would bring additional matching federal dollars to the state. Hill's legislation was known as the VIP Act (Vulnerable Individuals Priority Act). Advocates celebrated.

"I've never seen anything like it in my 30 years of living here in this state," said Thompson. "I am really excited about it. This is good government. This is people working together and this is people working together to identify a real need in our state ... it makes me so proud about government."

But the celebration wasn't long-lived. Nine months after signing the bill into law, Gov. Jay Inslee submitted a budget for the 2015-2017 biennium that includedslashing funding for the VIP Act in half. Instead of 5,000 more people getting services, just 2,500 developmentally disabled people would come off the wait list. Inslee's budget shifted that money to other places, angering advocates. 

"And he took 15 million [dollars] of it, and reversed something we've been trying to work on for decades. I was shocked. I still don't understand why he would feel like he needed to do that."

KING 5 asked Inslee that very question at a bill signing in May.

"A lot of tough budget decisions - we're going to have to make sure in the end we have a good protective social safety net. Sometimes you move things around to provide safety in another area," he said.

KING 5 found one area where Inslee proposed the money should go -- to caregivers represented by the well-oiled Washington Federation of State Employees. In other words, raises for some instead of providing direct services to families in need.

"What it really shows is what the priorities are. Budgeting is all about priorities," said Sen. Hill. "You'll never have enough money to do everything. So clearly this was a lower priority than other things the governor wanted to fund in his budget."

It appears the governor will not get his way. The full 5,000 people slated to benefit from the budget proposal put forth by Hill are expected to come off the wait list as budget writers finish their work in Olympia during the state's second special legislative session. Neither the Republican Senate nor the Democratic House are following the governor's budget request on this issue. Instead, both chambers agree that cutting more people from the wait list is a priority. Meanwhile, families like the Townsends continue to stand in line.

"I'm still waiting, my friends are still waiting, some other friends aren't waiting because they don't even bother to put themselves on the list because they heard about everyone else waiting," said Angel Townsend.

The new program is not a silver bullet. Ten-thousand people will remain on the wait list. And for those who do get services, it's not much. The Townsends are expected to receive $2,400 per child, per year, beginning this year. They hope to use the money for respite care and adaptive equipment such as a therapeutic swing.

"(The wait list) is a disservice to a great number of (Washington's) population, its community. Some of the most giving, kind hearted, precious, meaningful people, just as much as anyone else, deserve to have support," said Townsend.

 

To watch the complete video and to read the stories of many other people who are waiting for services go to:

http://www.king5.com/story/news/2015/06/04/developmentally-disabled-washington-services-wait-list/28502905/