ANNAPOLIS – It’s just after 8 a.m. on a Saturday morning at the home of Donald and Diane Creed, and they’re a little surprised that their daughter Larissa Creed isn’t awake yet.
After a few minutes, Donald Creed strides down the hallway of their homey, ranch-style house on a leaf-strewn street in Rockville. He gets to his daughter’s bedroom and greets her in a cheerful, high-pitched tone: “Hi! How are you?” and then, “Let’s turn off your noise machine.”
Larissa Creed is a 24-year-old woman with severe developmental disabilities. She lives with her parents, who are both in their 60s and work full time. And she is one of thousands in Maryland with developmental disabilities who are waiting for badly needed services.
Approximately 19,000 developmentally disabled children and adults deemed eligible for services from the Developmental Disabilities Administration are currently on a waiting list.
Using a measure known as fiscal effort, which the University of Colorado’s State of the States in Developmental Disabilities Project calculated by dividing a state’s total spending in this area by statewide aggregate personal income, Maryland appears to lag behind other states of similar means.
For example, in 2006, Maryland spent $2.93 out of every $1,000 of personal income, compared to $7.93 for New York, $7.66 for Connecticut and $4.78 for Massachusetts. Maryland is 43rd among all states in terms of fiscal effort, according to the University of Colorado figures.
Fiscal effort in this study was designed to look at a state’s capacity to spend on developmental disabilities services, said Rick Hemp, a senior professional research assistant on the State of the States Project.
It looks at the wealth of a particular state, whether they have the capacity to spend more and if they are doing so, Hemp said.
Hemp cautioned that measures of states’ performance in providing developmental disabilities services have their limitations. New York, for example, spends a great deal of money in this area, but those funds don’t necessarily go toward the best services, he said.
Maryland, while clearly on the low end in terms of fiscal effort, has made a lot of progress in recent years, both in how much it spends and in where it directs each dollar. Hemp also said that other data show Maryland increased its fiscal effort by 13 percent between 2004 and 2006–the second highest increase in the country for that time period.
Maryland is making progress, both in that it’s spending more money, and putting that money in the right areas, Hemp said.
But across Maryland this fall, citizens gathered town hall-style in churches and other places to express concerns and frustration about the length of the waiting list and to appeal to the state for action.
Approximately 300 people attended a Howard County town hall in Ellicott City in October, according to the Maryland Developmental Disabilities Coalition.
Parents of children with developmental disabilities testified about the daily struggles they face and called the need for services “a civil rights issue.”
While elected officials are aware that Maryland seems to be behind other states with comparable wealth in funding these services, they don’t agree on why that might be.
To Republican Sen. Allan Kittleman, the senate minority leader, the reasons are clear. Funding developmental disabilities services just hasn’t been a priority for Gov. Martin O’Malley, he said.
“The current administration has just chosen to fund other items in the budget at the detriment of the individuals with developmental disabilities,” Kittleman said.
Specifically, Kittleman criticized the recent purchase of a 1,000-acre stretch of what he called “swamp land” in Dorchester County with its $3 million price tag, as an example of what he thinks are askew budgetary priorities.
But Catherine Raggio, the governor’s secretary of disabilities, said the O’Malley Administration increased funding for developmental disabilities services by nearly $54 million in general funds between 2007 and 2010.
The data that show Maryland’s fiscal effort ranking poorly against that of other wealthy states, which are from 2006, would not reflect this increase. Raggio said she believes Maryland will appear better in comparison with other states when funding data are collected again.
Figures provided by O’Malley’s office show that funding for developmental disabilities has increased every year since he has been in office.
“I would expect that as a member of the General Assembly, (Kittleman) would avail himself of these figures, and see that funding for these programs is not only a priority, but the net increases in funding under Gov. O’Malley illustrates that despite the worst economic recession since the Great Depression, he is committed to protecting these priorities no matter how difficult,” said Shaun Adamec, the governor’s press secretary, in an e-mail.
Support for the needs of the developmentally disabled community has near-unanimous support in the Maryland state government, said Democratic Sen. Edward J. Kasemeyer, the senate majority leader.
But breaking through the current waiting list logjam would take a special effort and dedicated monies, and “we just don’t have the funding to dedicate to an effort like that.”
Asked when there might be enough funding for everyone who needs services, Raggio said the very deep recession needs to end, but that it’s hard to say when that will happen.
She said a lot of people currently on the waiting list are receiving some services from the state, even if it’s not everything they need or qualify for.
“We want families not to give up hope,” she said. “It’s a very discouraging time for them right now, a very scary time because they’re looking at budget cuts rather than increases and that’s certainly not a good way to send a message of hope but we know we will come out of this (recession) at some point.”
A healthy 9-pound baby at birth, Larissa Creed was two months old when her mother Diane Creed found her in her crib, not breathing. Rushed to the hospital, she spent a week in a coma, awakening on her own on Easter Sunday.
The Creeds were told their daughter was a case of interrupted sudden infant death syndrome (SIDS) and that she likely pushed her face into her pillow or against her mattress, cutting off her breathing.
Her survival was miraculous, but the lasting effects were heartbreaking. Deprived of oxygen for too long, her brain suffered extensive damage, leaving her with cerebral palsy and mental retardation.
Today, Larissa Creed is wheelchair-bound, non-verbal and has extremely limited vision–her father said they’re not sure how much she is able to see, maybe two yards in front of her.
The Creeds speak highly of the services Larissa Creed received while a student in the Montgomery County public school system. But there’s “no clear path” for their daughter after she became ineligible for public school at the age of 21, her father said.
So for now she attends a state-funded day program in Silver Spring, and a Metro Access van provides her transportation. But when she’s not there, she depends entirely on her parents for her care.
To keep up, they’ve developed a tag-team approach, staggering their work schedules around their daughter’s day program, which runs between 9 a.m. and 3 p.m., and sharing responsibilities on the weekends.
Occasionally, they will hire outside people to come in and help. They pay for this out of their own pocket.
A little over a year ago, the Creeds were notified that they’d been approved for 20 hours a week of in-home support services with funds from the Developmental Disabilities Administration. But so far, no funding has been made available.
Ultimately, they want to see their daughter placed in a residential setting where she’ll be safe and where her needs will be met.
“Larissa is ready for her own life,” Donald Creed said.
She has crisis resolution status and has been deemed eligible for residential placement, Diane Creed said.
They’re planning to file a request for such placement soon, but they expect to be turned down.