(This is the fourth story in a series on special needs in early education.)

Could autism overwhelm federal programs that support children with disabilities?

Autism appears to be nearly everywhere these days - 1 in 110 children are now diagnosed with the disorder, according to the Centers for Disease Control. It is on “Oprah,” national magazine covers and the minds of parents.

Now there are signs not every child that could have autism is getting diagnosed. Researchers found lower rates of diagnosis among African American and Hispanic families and suggestions that parents’ education may play a role in getting a diagnosis, according to a commentary.

What would happen if every family had access to high-quality autism screening and intensive services, which can total more than 20 hours a week? Would the system fall apart? These are among the questions raised by the commentary “Is Autism the Disability that Breaks Part C?”

We worry, however, that as professionals continue to make recommendations for intensive early intervention for children with ASD (autism spectrum disorders), the programs are going to crumble under the additional burden. – “Is Autism the Disability That Breaks Part C?” Journal of Early Intervention, 3/10.

The fact is the recent spike in autism diagnoses is already straining the system. Parents of autistic children run into waitlists, a shortage of therapists and health insurance that often fails to cover tens of thousands of dollars in therapy a year. This occurs even in cities such as Seattle, which are home to cutting edge research and support.

The commentary wonders whether this increase could strain or break federal support for disabled infants and toddlers, known as Part C.

One of the most important issues it raises is a divide between haves and have nots within the autism community.

We worry, however, that establishing an early and accurate diagnosis may be related more to where a family lives, whether the parents went to college, and what medical insurance they have than to the young children's behavioral profiles. To the extent that our perceptions are valid, something in "the system" is not working. – “Is Autism the Disability That Breaks Part C?”

Schwartz also suggests there is a gap between families who get a diagnosis of autism for their child and those whose children have another type of developmental delay.

“There is also a divide between families who have ASD (autism spectrum disorder) and those who do not,” Schwartz wrote in an email. “…But we need to provide services for all children that are high quality.  Unfortunately… the way schools are funded that is becoming increasingly difficult.”

The co-authors write in their commentary they are far from opposed to intense early intervention for children on the autism spectrum. In fact, they point out they developed one of the models. Instead, they write the system needs to be changed to ensure all families raising a child with a disability get support.

Co-author Ilene Schwartz, who adds in the story she is hopeful the system will not collapse, has ideas to ensure the system doesn’t break.

One of her most interesting proposals is that high quality child care could help manage the burden.

“If all children had access to high quality child care, then we may be able to provide fewer hours of specialized instruction.  High quality child care where children are engaged and have high quality and consistent interactions with caring adults, supported by some specialized intervention and some training for parents and other caregivers may be sufficient and it would certainly be more sustainable and more child friendly,”    Schwartz, director of the University of Washington’s Haring Center for Applied Research and Training in Education, wrote in an email.

Schwartz raises more questions than answers – not surprising given we don’t know what causes autism or how to cure it.

It sounds like we need to start answering some of these questions before the system breaks down even more.

Article: “Is Autism the Disability That Breaks Part C? A Commentary on "Infants and Toddlers With Autism Spectrum Disorder: Early Identification and Early Intervention, “by Boyd, Odom; Humphreys, and Sam.” By Ilene S. Schwartz and Susan R. Sandall, University of Washington, Seattle. Journal on Early Intervention, 3/10.

In this era of diagnosis, a new study suggests that when a child is born can mean he or she is more likely to be diagnosed with attention deficit hyperactivity disorder, MSNBC.com reports today.

North Carolina State University researchers found that children born just after the kindergarten eligibility cutoff date were 25 percent less likely to be diagnosed with ADHD than children born just before the cutoff date. Children born just after the cutoff date are among the oldest in their class, and those born just before the cutoff date are among the youngest in their class. – LiveScience via MSNBC.com, 8/18/10.

The research and story raise several concerns. For example, are many students receiving an incorrect diagnosis of ADHD only because they are the youngest in a classroom?

It is also only one of the latest developments in the debate over diagnosing mental disorders and mental illnesses in children. A label of youth bipolar or ADHD often comes with a prescription for drugs with side effects, even though there is disagreement about how those disorders are diagnosed.

Toddlers Using Stats: It turns out toddlers use statistics when they play, a new study says.

Researchers found toddlers relied on non-random sampling to decide what toys someone wants, according to work conducted by researchers at Cornell University, University of California, Berkeley and University of Michigan.

They watched the adult choose five toys that were either 18 percent or 82 percent of the toys in a box. The adult played happily with the toy either way, but the toddler only concluded that the adult had a preference if they'd picked the toys from a box in which that toy was scarce. – “Preschoolers Use Statistics to Understand Others.” HealthNewsDigest, 8/17/10.

The number of children in Washington state being diagnosed with special needs continues to go up. But the funding to support these children isn't keeping pace. In fact, it's being cut at state and national levels.
 
Each year, the nonprofit Kindering Center in Bellevue center provides therapy, special education and counseling to more than 3,000 children from birth to 3 who are disabled, medically fragile, or vulnerable because they've been neglected or abused. And last year, they made room for another 100 children in their early intervention program - a commitment to the youngest children needing their help.
 
But last year, the gap between the cost of services and funding widened substantially because of drastic budget cuts from the state and county. The center is struggling to pay for uncompensated care given to developmentally delayed infants and toddlers.
 
Watch this Learning for Life as we talk with Mimi Siegel, the long-time director of the Kindering Center, about the increase in children needing their services, the current financial challenges of providing that help and what she thinks needs to happen to make sure children get the support they need. 

(The second in a series on special needs in early learning.)

Budgets for early learning are tight these days, but key federal spending for infants and toddlers with some of the greatest needs, those with disabilities and delays, may be even tighter.

Over the last six years, critical federal support for toddlers and infants with disabilities essentially stalled, even as the number of children who qualified for that support jumped 25 percent, according to data from The National Early Childhood Technical Assistance Center.  This year didn’t start much differently, as the Obama administration proposed freezing funding for this support, the main federal special needs early learning program known as Part C, the Council for Exceptional Children reported.

This contradiction of greater demand and little or no new money has reverberated through the world of early intervention. Many states narrowed eligibility for programs, some charged parents for services, waiting lists grew and there were anecdotal reports of children receiving less support, interest groups that track spending say. Now, some worry states may even drop out of the voluntary program.

The broader meaning of these cutbacks is that even as interest and investment in early learning grew in recent years, within that world support for those with special needs often went in the opposite direction.

“…When states charge for services - especially in this economy - parents who cannot pay must forgo them even if they are needed,” Lindsay Jones, senior director of policy and advocacy services at the Council for Exceptional Children, which focuses on helping both disabled and gifted children, wrote during an email interview.

The early learning budget for special needs children is more complex than Part C, a program in the Individuals with Disabilities Education Act that helps states coordinate services and serves as back-up funding source. States rely on a mix of Medicaid money, Part C, their own funds, local school district funding and other sources.

But, Part C is a big part of this investment and cutting or nearly freezing its funding may well cost not save money over the long run.

“Despite the lack of funding for these services, we know that early intervention provides a greater return on investment than almost any other intervention during the lifespan,” the Council for Exceptional Children’s Jones added. As “we are able to identify and address disabilities at earlier ages, research demonstrates that when children receive strong early intervention services many if not most do not need the same level of special education services across the full length of their education.”

One study, for example, found Pennsylvania’s Pre-K Counts program slashed the historical special education placement rate from 18 percent to 2 percent.

While there may be a growing body of research supporting early intervention, providers have been forced to cut back.

After the special needs provider Kindering Center saw its Part C funding slashed from $110 a child a month to $68 over the last two years - an amount that’s supposed to fund up to 17 services for one child – it had to make some tough choices.

The nearly 50-year-old neurodevelopmental center halted professional development and training, froze wages, and temporarily stopped contributions to the employee retirement plan. It has since resumed professional training. Kindering, however, did not cut services for families.

The center took a double hit because like other birth-to-three agencies serving the disabled in the Seattle area, and likely across the country, Kindering relies heavily on fundraising, which slumped along with state and federal budgets during the recession.

Last month, however, Congress offered Kindering and other centers an encouraging sign they might get more money in 2011. The Senate Appropriations Committee added $20 million for Part C to the fiscal 2011 budget, according to the Council for Exceptional Children’s Policy Insider blog.

The lack of funding for Part C, combined with rising costs and the voluntary nature of state participation in the program, has fed real concerns that states would drop out of the program because they would no longer be able to afford it. While this $20 million will not solve all of these problems, it is a step in the right direction which CEC believes it can build upon in the years to come. ” – Policy Insider, 7/30/10.

President Barack Obama also gave special education a big bump in funding in the economic stimulus package last year. In Washington, the Department of Early Learning used a portion of that money to launch an 18-month project to improve how the state helps families raising children with special needs.

Short-term projects and one-time funding, however, will not be enough to support the growing number of infants, toddlers and preschoolers who are being diagnosed with a developmental delay or disability.

“The real test will be next year when the ARRA (2009 economic stimulus) funds are no longer available. There is no doubt states are scrambling to survive current state budget cuts,” Maureen Greer of the Indianapolis, Indiana-based IDEA Infant Toddler Coordinators Association, wrote in an email.

You notice your child isn't meeting typical childhood development milestones. Or maybe you sense that something isn't quite right with your child. There is help. And children benefit when families access that help as soon as possible. 

Families can reach out to their local pediatrician or the state's Early Support for Infants and Toddlers, an early intervention program that provides services to children birth to age 3 who have disabilities and/or developmental delays.

Watch this Learning for Life, we talk with Dr. Bette Hyde, director of the state Department of Early Learning, which now oversees the Early Support for Infants and Toddlers program, about the supports available to children with special needs and how to access the program as well as how this growing group of children fits into the state's new 10-year early learning plan. This segment is the first in a month-long series Learning for Life – and Thrive’s daily blog Birth to Thrive Online – is doing on children with special needs.

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Learning for Life airs every Wednesday on KING 5 Morning News on KONG 6/16 TV between 8:15 and 8:30 a.m.

Please send any story ideas about people, programs and work being done to support children from birth to age 5 to molly@thrivebyfivewa.org. 

Learn more and watch past Learning for Life series and specials here.

(First in a series on special needs in early learning.)

Special needs families sometimes seem stuck in the back rows of early learning debates, at times overlooked in discussions about building a better child care system. But, the growing ranks of children with autism and other disabilities may move them closer to the front.

The reality is many parents of infants and toddlers with special needs navigate a different and more complex child care world than most families. It is a confusing world of assessments, expensive medical services, therapies and inadequate health insurance. The result is these families work far harder to create an educational experience that other parents of more typical children find in a single classroom.

In the expanding debate over building a better early learning system where do these families fit?

They don’t always fit into public debates.  When politicians discuss the need for higher quality child care and preschool, these families are not always mentioned.  It is not an intentional slight - the special needs population is relatively small – but given potential benefits of inclusive classrooms for disabled and non-disabled children you might think they would have a bigger role.

Sometimes these families are not even in early learning.

One Seattle mother says she doesn’t know any families with special needs children who go to organized child care. Often, one parent stays home, which can work well but takes away income when a family needs it for their child’s medical bills and other services, or they rely on a nanny, Aleksandra Markanovic Radmanovic, wrote during an email interview.

“It's unbelievable how much money it takes to raise a child with special needs. Everything seems to be exponential! Everything - and that includes childcare,” Radmanovic, whose son has multiple disabilities, added.

Even though it is expensive, funding for one of the key programs that helps these families, Part C, has been stagnant in recent years, according to data from The National Early Childhood Technical Assistance Center. Part C is the program of the Individuals with Disabilities Education Act that supports coordination of statewide early intervention systems for infants and toddlers.

“The availability of high quality child care is not anywhere near where people would like,” said Maureen Greer, administrative liaison at the IDEA Infant Toddler Coordinators Association.
These families are not ignored – there are strong networks of federal, state and local programs that help special needs children and their families. Washington State’s Department of Early Learning, for example, took over the Early Support for Infants and Toddlers program last month.

Given their growing numbers, though, do these families deserve a bigger role in the debate over creating a better early learning system?

Diagnosis rates are rising. Today, an estimated 1 in 110 children are diagnosed with autism, up from 3 or 4 in 10,000 about a decade ago and as many as 10 percent of children have attention deficit hyperactivity disorder. Rates of depression and youth bipolar disorder in children also rose.

Overall, the number of infants and toddlers with disabilities who have early intervention plans jumped from 194,000 in 1990 to 343,000 in 2008, according to The National Early Childhood Technical Assistance Center.

The impact is clear: Regardless of your opinion about why these rates are rising, more parents are likely searching for child care centers and preschools that can support their child’s special needs.

One of the problems is there isn’t enough in federal and state budgets to finance popular general improvements in child care and preschool, let alone for changes in special needs programs.

There are signs of progress. Washington State’s draft early learning plan would expand two key services. The plan calls for universal developmental and social-emotional-mental health screening and referrals from birth through third grade. It also would add at-risk children, such as those in foster care and some born prematurely, to those served by the Early Support for Infants and Toddlers program.

Of course, Washington will have to find new funding for some of these changes.

“We know that making these enhancements to screening and accessibility will mean changes in policy and, in some cases, more money. Obviously, there are not many extra dollars to go around in this current budget situation, but we will continue to encourage smart investment in programs like early intervention that we know more than pay for themselves over time,” Amy Blondin, a spokeswoman for the Department of Early Learning, wrote in an  email.

One thing is clear. There are a growing number of families with special needs children and they could become a more powerful force in the early learning debate.

Over the next three weeks each Tuesday we will explore issues special needs families face in early learning:  The tight budget situation and how it could affect support; one family’s effort to find the right child care; and a look at autism’s role in both raising the profile of special needs and straining its resources.

When Washington State’s program for infants and toddlers with disabilities and developmental delays moved to the Department of Early Learning last month, we decided it was a good time to look at how parents with special needs children navigate child care.

On Tuesday, we will start a series that asks: Where do special needs families fit in early learning? The opening story will explore challenges these parents face finding quality care and preschools, whether they are often overlooked in the debate about building a better early learning system and how the growing number of kids with diagnosed disorders could change all of this.

Over the next month, stories will cover the tight federal budget that funds services for these students and whether cuts could tear the safety net that supports them, one family’s story about finding child care and how autism and the growing number of children diagnosed with the mysterious neurological disorder are straining and changing the system.

Finally, we will offer a list of national and local resources on early learning and disability.

In addition, top experts will offer their thoughts on the challenges special needs families face finding child care on King Five Morning News in the Learning for Life series, a joint venture between Thrive by Five Washington and BELO Seattle.

Disability, however, is complex and this series is not designed to offer a definitive review. Instead, these stories will highlight key and emerging issues and hopefully start a conversation with a community that too often seems left out of the debate over early learning.

It is a good time to talk about the intersection of disability and early learning because Washington State is moving towards the center of the issue. For example, Washington is using money from last year’s economic stimulus package to fund a project to improve the Infant and Toddler Intervention program.

Come back on Tuesday and we will start the conversation.

What do you do when your 8-month-old seems to understand the word "no," but ignores you? Is he already being defiant? Is it time to think about discipline?
 
Many parents start thinking about discipline when their baby is about 8-12 months old, moving around and showing some awareness of what "no" means. Parents may even become frustrated and angry at their babies.
 
Watch this Learning for Life as we talk with Kathy Zeisel, state leader of Parents as Teachers at Parent Trust for Washington Children, about what babies really know and can do and what discipline is for infants and toddlers.

Learning for Life airs every Wednesday on KING 5 Morning News on KONG 6/16 TV between 8:15 and 8:30 a.m. Please send any story ideas about people, programs and work being done to support children from birth to age 5 to molly@thrivebyfivewa.org.

View past Learning for Life series and specials on Thrive's website. 

Key barometers of U.S. children’s well being declined before the economy hit bottom, with the percent of low-birthweight babies and percentage of kids living in poverty both rising in 2008, a new report says.

Plus, more than a quarter of U.S. children lived in homes where no parent had year-round full-time work in 2008, according to this year’s 2010 Kids Count Data Book.

The Annie E. Casey report is the latest to show the extent that children and families struggled as the nation began one of the worst economic downturns in a generation. It found the percentage of children living in poverty rose slightly to 18 percent from 17 percent. This means roughly 1 million kids lived below the federal poverty line - $21,834 a year for a family of two parents and two children. (Check out the great blog EarlyStories for other reports.)

The rate of low-birthweight infants is one of those indicators that are particularly important to early learning advocates, since there is an emphasis on starting quality child care in the womb and infancy and premature babies often struggle early on with health problems.

Overall, progress on children’s well-being stalled even before the economy became really weak, according to the report.

…Overall improvements in child well-being that began in the late 1990s stalled in the years just before the current economic downturn…        Experts project that more up-to-date Census data will show the child poverty climbing to above 20 percent. – 2010 Kids Count research summary, 7/27/10.

There is good news. Washington State ranked 11th among U.S. states, territories and the District of Columbia. (You can read Washington’s profile here.)

Washington families are also reading to their kids. Only seven percent of the children are read to less than three times a week by their families, well below the national average of 16 percent.

The report is full of good news – the teen birth rate fell – and bad news. Check it out.

Each month the economic argument for quality child care, preschool and pre-kindergarten seems to grow stronger and this week another writer linked investments in early learning with a stronger economic future.

In the Huffington Post piece, Pat Earley highlights many of the benefits of spending money on early learning, but she also explains that investments don’t always follow.

The United States currently faces serious education and budgetary problems. There is a growing body of work that shows that high-quality early childhood development and education is a powerful way to help address these problems and lay a foundation for human and economic growth.

…

Although most policy makers agree on the importance of early childhood education, budgetary constraints, as well as an inability to view these programs as fiscally sound investments in tomorrow's future workforce, continue to stand in the way of redirecting funds toward the early years. – “Teach Your Children Well,” Huffington Post, 7/21/10.

The story also argues that early education isn’t only about teachers, classrooms and curriculums. It needs programs that “integrate the family into the solution.”

In a related development, the College Board reports today that the U.S. has fallen to 12th in the proportion of adults ages 25 to 34 who hold postsecondary credentials.

"The growing education deficit is no less a threat to our nation's long-term well-being than the current fiscal crisis. It requires the same kind of attention and action at the highest levels of our education institutions and national and state governments," Gaston Caperton said in a statement. "To improve our college completion rates, we must think 'P–16' and improve education from preschool through higher education."

Some would say there is a connection.