But, as one of a small but growing number of infants across the country taking part in a new generation of programs for infants born with disabilities or at risk of developing them, this 7-month-old may yet beat those odds.
Almost since Marcus was born, a team of special educators, therapists, and doctors from George Washington University and its affiliated hospital here have been working with his mother to show her how to care for her child, encourage his intellectual development, and correct the abnormal muscle-development patterns common to many premature babies. They showed her how to hold her son curled close to her chest to simulate the experience of being in the womb. They Cautioned her against using a walker with the boy and demonstrated how she could correct Marcus’s tendency to arch his arms back by rolling up towels and propping him against them “If I had not known these things,"said Marcus’s mother, Michelle Spurlock, “I would’ve assumed that that was just the way he is and he didn’t need to be corrected.”
Marcus’s program is a federal demonstration project operated jointly by the hospital and the university. But programs like this one are taking shape all over the country, due in part to a sweeping federal law intended to get more help, sooner, to the nation’s youngest handicapped citizens.
The 1986 amendments to the Individuals With Disabilities Education Act, known as P.L. 99-457, provide a strong incentive for states to extend special-education programs to children as young as 3, and offer seed money for states to pull together comprehensive systems for serving disabled children from the time they are born until their third birthdays
Still in infancy itself, the law reaches a critical juncture this year as the Congress embarks on the process of reauthorizing it. Under the law, states soon must announce whether they can meet the mandate in the law to ensure services for every disabled infant and toddler who qualifies, or whether they will dropout of the program.
A number of states, suddenly faced with an economic recession and a realization of the enormity of the task before them, are beginning to think twice about those commitments and state program developers say the outcome of the Congressional reauthorization process, which began with a Senate hearing this month, could well determine whether every infant and toddler born at risk of becoming disabled will have the same chance for a normal life that Marcus now has. (See related story on page 29.)
A ‘Most Important’ Time
Both of the early-intervention programs established under the law grew out of an overwhelming consensus among educators that intervening early in the lives of handicapped and “at risk” children can make a dramatic difference in their educational progress--and possibly even lessen the need for more expensive, potentially stigmatizing special-education services later on in life
“For 25 years, we’ve been hearing we ought to be providing services for infants and toddlers and their families because that’s the most important time to intervene,” said James J. Gallagher, director of the Carolina Policy Studies Program at the University of North Carolina at Chapel Hill. “This law finally addresses that.”
The law has two key features. The first is the requirement that states guarantee a free, appropriate education for all handicapped 3- to 5-year- olds by Sept. 30 of this year, or risk losing all federal special-education money targeted to that population. This includes federal special-education funds used for demonstration projects, such as the one serving Marcus, and research centers.
Technically, however, the only part of the law scheduled for Congressional scrutiny this year is the newly created program for infants and toddlers born with disabilities or at risk of developing them. That program, known as Part H, provides what is referred to as “glue money” to help states pull together a wide array of educational, social, and health services for the families of disabled children age 2 and under.
The systems developed by the states must also involve--and scavenge funding from--every state agency already serving families and children in some way. Multidisciplinary teams must evaluate each child. And individual service plans--similar to the individualized education plans used by special educators--must be prepared for every participating family “I don’t think there is any other federal program that requires that kind of inter agency coordination,” said Judith A. Schrag, director of the Education Department’s office of special-education programs. “Certainly, the education-reform movement has been talking a lot about that lately, but that has been a phenomenon of the last two or three years.”
By their fifth year of participation in the program, which many states are now nearing, states must either guarantee services for every handicapped infant and toddler who qualifies or drop out of the program.
A Spur to Action
Although neither program has yet fully taken effect, the law already appears to have spurred states to take action
Nationally, the number of handicapped 3- to 5-year-olds receiving services, for example, has increased from 260,000 in 1985 to an estimated 60,000 by next year, according to the Education Department. And the number of states and jurisdictions that have yet to mandate special-education services for that age group has decreased from 17 in 1986 to just 7 this year. Those jurisdictions are: Georgia, Indiana, Mississippi, North Carolina, Oregon, South Carolina,and the Northern Marianas.
The increases have been even ore dramatic for younger children with disabilities. The department estimates that the number of infants and toddlers being served has grown from 36,000 during the 1984- 85 school year to 247,000 this year. Five states now mandate services for handicapped children from birth.
“In my opinion, [the law has] been the catalyst Congress intended it to be,” said Barbara J. Smith, a researcher and executive director of the division of early childhood of the Council for Exceptional Children. There’s been significantly more attention to planning at the state and local levels,” she said, “and, in some states, the state money avail able for infants and toddlers has in creased dramatically over the last four years.”
The question now is whether the momentum can be maintained. While every state participated in the Part H program in the first three years, a report issued this month by the National Conference of State Legislatures indicates that as many as 15 or 20 states now are having second thoughts.
“Unless major changes are made, probably states will have some difficulty getting on with this,” said John Clark, the state director of special education in Nebraska
At the heart of many of those wavering commitments, program developers and experts say, are concerns about how to finance the program. ''When this was enacted in 1986, there were different fiscal realities,” Norena Hale, former president of the National Association of State Directors of Special Education, told a federal committee in December. “Now, our national economy is showing signs of recession and this commitment is among a number of competing demands for increasingly scarce resources.” (See Education Week, Dec. 5, 1990.)
Recent reports have indicated that more than 30 states are experiencing serious financial crises as a result of the recession.
Even Gov. Lowell P. Weicker Jr.of Connecticut, who as a United States senator was one of the most vocal proponents of the early-intervention program, said he agonized this year over whether his state could afford to continue with the program. The state budget is $2.4 billion in the red, and Mr. Weicker has said he plans to cut state expenditures by one-third to balance it.
In the end, he wrote in a letter to Senator Tom Harkin, the Iowa Democrat who chairs the Senate panel overseeing the reauthorization, he decided in favor of keeping the early-intervention program.
“Our fiscal situation is bleak,” Mr. Weicker’s letter read, “but not nearly so bleak as the prospect of seeing these precious children grow up without the help and services that make all the difference in the quality of their lives.”
Not every state with fiscal constraints, however, has an advocate like Mr. Weicker at the helm. And even program coordinators in states with long histories of serving handicapped infants and toddlers, such as California and Massachusetts, report they are uncertain whether to remain in the Part H program
“We’ve got a lot of experience with this,” said Karl Kastorf, who is coordinating early-intervention efforts in Massachusetts, “and it ain’t going to happen.”
Moreover, program coordinators in those and other states add, efforts in their states to scrape together funds from the various state agencies involved have fallen far short of the need. In fact, a Georgetown University study estimates that, even in those states with the most advance dearly-intervention systems, the gap between available resources and needed funding ranges from 20 percent to 25 percent.
“Everyone knows that programs serving infants in this country are not all that well funded,” said Ms.Smith, who is also senior research scientist in the early-intervention program at Allegheny General Hospital in Pittsburgh. “It’s just an erroneous assumption to assume there is a program out there that is not a ready being fully utilized.”
“What happened under the law,” said Richard M. Clifford, associate director of the University of North Carolina’s program, “was an admission by the federal government that it was not able to coordinate federal programs for these services.”
“So what it did was basically say to states, ‘It’s your responsibility,”’ continued Mr. Clifford, who has written a paper advocating several new funding mechanisms for the program. “It’s interesting the federal government didn’t tell itself to do that.”
Historical Precedents
Some of the states’ nervousness over the impending mandates, several organizations and observers say, stems from fears that the federal government will not keep up its part of the bargain. They point out that when the Education for All Handicapped Children Act was passed in 1975, lawmakers said that the federal share of the cost of educating handicapped children would reach 40 percent. In practice, it has never exceeded 12 percent.
The year that P.L. 99-457 passed, federal funding for its two programs was $28.7 million. For the current fiscal year, the Congress has approved $292 million for the preschool program and $117 million for infants and toddlers. Funding for the Part H program, in particular, was increased 47 percent in the cur rent fiscal year.
The increase, said Robert Silverstein, director of the Senate subcommittee, is evidence that Mr. Harkin has made the program “a major priority.”
“There was a significant increase in ‘91, and Senator Harkin has said publicly he wants a significant increase in ‘92,” he said.Mr. Harkin was able to secure this year’s increase in his role as chairman of the appropriations subcommittee that controls education spending.
Even that amount, however, may not be enough, according to some education groups.
The federal government “has functioned as very much of a junior partner in the financing of this massive effort to provide an education to individuals with disabilities,” Jonathan Wilson, a local school-board member from Iowa, said this month as he testified before Mr. Harkin’s reauthorization panel on behalf of the National School Boards Association.
“This is of increasing concern to school leaders,” he said, “as growing numbers of children come to the schoolhouse door each year with severe barriers to learning.”
‘Using Up Chips’
Apart from funding issues, pro gram coordinators in some states say, the structure of the law and the size of their task have also contributed to some delays in implementing the program.
The problem is particularly acute for the states that had no such pro0 grams in place before the law was passed.
“We used up a lot of chips to get the preschool mandate through the legislature, and then we had to say,'Oh, by the way, we’ve got this infant mandate, too,”’ said Brian McNulty, the state director of special education in Colorado. He said the state was “close, but not close enough” to having its full system in place by next year.
Mr. McNulty also noted that the regulations of the various state agencies involved in the early-intervention efforts do not always fit together neatly
Programs that charge sliding fees for services, for example, would be prohibited from doing so if funds from the Chapter 1 handicapped-education program are being used to pay for the early-intervention efforts. Also, the individual service programs required by the law for each family are a completely foreign undertaking for health and social-0 service professionals -
Moreover, said Julie Jackson, California’s program coordinator, the agencies designated to lead their states’ early-intervention program often lack any real authority to do the job.
“The law says you have to have a lead agency and, in California, that’s us,” said Ms. Jackson, referring to the state department of developmental services. “And it says we should assign fiscal responsibility to other agencies.”
“That’s absurd,” she added. “We Can’t tell them what to do.”
In addition, as predicted more than four years ago, states are having difficulty finding personnel to staff the programs they are developing. Professionals who come from the minority communities where they are most needed are even more difficult to find, according to advocates
All of these impediments have led in recent months to a consensus among education groups, advocates for people with disabilities, and some key lawmakers that some of the deadlines written into the law may have to be relaxed
“Otherwise,” said Mr. McNulty,"there will be a mass fallout of Part H and it will fall apart.”
In the meantime, the Part H pro grams in the states are taking on a variety of forms.8
&
In Iowa, said Diane Sanny, the mother of a 3-year-old daughter who was born with a severe muscoloskeletal disorder, the local education agency began sending a preschool teacher, an occupational therapist, and a physical therapist to her home when her child was 3 months old. Later, when Ms. Sanny was having difficulty coping with the added responsibilities of caring for a severely disabled child, professionals from seven different disciplines came to her home to prepare a family-service plan for the Sannys.
A key feature of Marcus Spurlock’s program at George Washington University Hospital--which,as a federal demonstration project, could become a model for early-intervention efforts in the states--is weekly sessions at the hospital for at-risk infants and their families. The sessions, which begin when the child is about 2 months old, include both support and guidance for the parents and guided play activities for the children
In Colorado, Mr. McNulty said,other parents of disabled children are recruited to make the first con tact with new parents to find out what services they want
“If they say they don’t need any thing now and they want three weeks or three months to work with the baby, fine,” Mr. McNulty said “It’s causing us to change the en tire system from what was a clinically based, intervention model to a family-focused, naturalistic model,” he said. In a number of states, the “family focus” of the infant-and-toddler pro gram is carrying over to programs for older preschoolers. Rather than becoming simple extensions of existing special-education programs for school-age children, advocates and some program coordinators say, the preschool programs should look ore like Part H efforts
“When we see a child at 4, his or her needs are much more akin to [those of] a 2-year-old child than a middle-school or high-school student,” George Jesien, president of the Council for Exceptional Children’s division for early childhood, said during the Senate hearing
In the preschool program, states are also finding creative ways to carry out federal requirements to provide the children with education in the “least restrictive environment” possible, a term that usually is taken to mean settings alongside non-handicapped peers. In school districts that already have preschool programs for non-handicapped children, integration simply means placing children with disabilities in those classes or in Head Start programs ?
Some states, however, have arranged for private preschools to take on the children while the school system provides itinerant special educators to visit the classrooms and work with all the children
A number of school districts have opted for “reverse mainstreaming,” setting up a class for handicapped children and inviting non-handicapped youngsters to attend.
Despite the difficulties, program developers in a number of states say public support for the program has been high. And it has continued to grow as the benefits become increasingly apparent
“Frequently, we’ve seen children improve dramatically and the locals report that, when they’re serving a family, they’re serving them for a shorter period of time,” said Carol Ann Baglin, director of Maryland’s infant and toddler program(
In the end, experts predict, all states are likely to stay in the program
“It would be difficult to abandon effort that means so much to so many people,” noted Mr. Gallagher of the University of North Carolina
To mothers of handicapped children, such as Michelle Marlow of Baltimore, even the fledgling efforts taking shape in the states now are a vast improvement over the time 11 years ago when she took her severely disabled daughter home from the hospital. Her daughter, Tanika, then about a year old, has cerebral palsy, a seizure disorder, and severe mental retardation.
Testifying before the Senate panel this month, Ms. Marlow tearfully described how doctors told her to “just take the child home and love her.”
“I wanted something more than that,” she said. “I wanted her to be the best she could be.”
