[Congressional Record Volume 144, Number 67 (Friday, May 22, 1998)]
[Senate]
[Pages S5461-S5462]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         ADDITIONAL STATEMENTS

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                         SPECIAL NEEDS CHILDREN

 Mr. GRASSLEY. Mr. President, on Saturday, April 18, 1998, an 
article ran in the Rochester Post Bulletin in Rochester, MN that 
illustrates very well the tremendous child care challenges facing 
families. This is a story about a child with disabilities and her 
parents who are having increasing problems finding quality child care. 
Mr. President, I will ask that this article be printed in the Record at 
the conclusion of my remarks.
  Mr. President, at the age of six months, this young child--Christina 
Barth--developed infantile spasms or epilepsy. Christina is not alone. 
More than two million Americans have some form of epilepsy. More than 
one fourth of them are children under the age of 18.
  Upon her diagnosis, Christina was treated with many different types 
of medication. Unfortunately, none of the treatments worked 
successfully. Then, at the age of three, Christina underwent a partial 
lobotomy on the right side of her brain. The surgery successfully 
treated her disease for almost two years. But then, the symptoms 
developed on the left side of her brain. Since that time, Christina has 
lived with epilepsy.
  Now Christina is 11 years old. She attends a special education class 
at Gage Elementary School. She functions on the cognitive level of an 
18-month-old child. Her family hopes and prays that a cure for epilepsy 
will be found someday.
  Like most other families with special needs children, Christina's 
parents face daily challenges in caring for their child. Identifying 
high quality child care is among the most difficult challenges her 
parents face.
  Finding a child care provider--whether it be a commercial day care 
center or an in-home care giver--is becoming more and more difficult. 
This point was made by a witness who recently testified before the 
Finance Committee about the challenges of finding child care for a 
child with disabilities.
  Most child care providers tend not to enroll special needs children 
because often the child needs one-on-one care. And, the fear of the 
unknown presents an added risk to an already demanding job.
  In Christina's case, a state funded agency has helped her family 
locate an in-home care giver that cares for Christina while her parents 
are at work.
  But, Mr. President, access is only the first hurdle in finding child 
care. Quality is equally important. Unfortunately, in Christina's case, 
her child care providers have not been adequately trained to handle or 
even recognize when Christina has an epileptic attack.
  At one time, Mr. President, the agency that placed the providers with 
Christina called her parent's to warn them of an employee and told them 
to call the police if she came to their home.
  This raises a question Mr. President. Who is watching the watchers?
  Mr. President, in the national debate about child care it seems to me 
that not enough is being said about the challenges facing families with 
children who have disabilities.
  Child care policies must address issues of access and quality as it 
relates to special needs children. Many of the bills introduced this 
year do not address special needs issues. In fact, Senate bill 1610 
asks for more than 20 billion dollars through fiscal year 2003 to 
improve the affordability of child care and an additional three billion 
dollars through fiscal year 2003 for enhancing the quality of child 
care and early childhood development. However, there are no provisions 
regarding an increase of availability, affordability, and quality Of 
child care for children with special needs.
  It is our duty, Mr. President, to make sure that these special needs 
children and their parents have the same opportunities as other 
children and families. Today I urge my colleagues on both sides of the 
aisle to make sure that children with special needs are not left out or 
forgotten in any legislation regarding child care that comes before 
this Congress.
  Mr. President, I ask that the article from the Rochester Post 
Bulletin be printed in the Record.
  The article follows.

       Special Needs Child Care Is ``Accident Waiting To Happen''

                            (By Mary Divine)

       Julie Sauer's daughter was only 6 months old when she began 
     shaking and quivering uncontrollably. No reason, no 
     explanation.
       For the next two years of her life, little Christina Barth 
     experienced almost constant seizures, said Sauer, a lab 
     technician at Mayo Clinic. Finally, when she was 2\1/2\, 
     Christina underwent a partial lobotomy at UCLA's Medical 
     Center.
       Christina, now 11 and a student at Gage Elementary School, 
     is mentally disabled and has an intractable seizure disorder. 
     She functions at the level of an 18-month old child, Sauer 
     said.
       Because of her special needs Christina needs specialized 
     child care, child care that Julie Sauer said isn't available 
     in Rochester.
       ``Our dilemma is finding child care for her before school, 
     for non-school days and for the upcoming summer vacation,.'' 
     Julie Sauer said.
       Sauer and her husband, Bob Sauer, the owner of Rochester 
     Drain-Rite, have been in touch with the School-Age Child Care 
     program. Child Care Resource and Referral, Arc Olmsted 
     County, Hiawatha Homes and a home day care provider. Child 
     Care Resource and Referral found that area day care centers 
     and School-Age Child Care did not have enough staff to 
     provide the one-to-one care Christina requires, Julie Sauer 
     said.
       ``If only there were a place that was capable of taking 
     care of her, like a day care center,'' Julie Sauer muses as 
     she strokes her daughter's hair.


                          Unsatisfactory care

       Since the beginning of the school year, the Sauers have 
     relied on before and after school care provided by a personal 
     care attendant. But the Sauers say the care isn't 
     satisfactory.
       ``We had five new people in one week.'' Bob Sauer said ``We 
     have people who never even showed up.''
       The turnover in staff is confusing to Christina, Julie 
     Sauer said. ``She doesn't want to

[[Page S5462]]

     get off the bus because she doesn't know them.''
       If a snow day is called, the Sauers panic.
       But they panic on other days as well. Once, they came home 
     to find blood on the carpet and a shower rod in the upstairs 
     bathroom ripped from the wall. Christina was fine, but the 
     personal care attendant on duty that day was never allowed 
     back into their home.
       Often, they have Bob Sauer's daughter from a previous 
     marriage watch the personal care attendant who is supposed to 
     be caring for Christina.
       ``Sometimes I think that it's Christina who should be 
     watching them,'' he said.
       One attendant didn't realize Christina was having a seizure 
     until Sauer's son told her, Sauer said.
       ``We have strangers coming into the house who just don't 
     have a clue,'' he said. ``There have been people in this 
     house that we have never met. Once, they called and warned us 
     about one of the PCAs. They said, `If she comes to the door, 
     don't let her in. And if she will not leave, call 911.' It's 
     an accident waiting to happen.''
       Julie Sauer has written area legislators about the lack of 
     child care for special needs children.
       Hiawatha Homes provides respite care, but the children must 
     stay overnight to be reimbursed by the state, she said.
       ``I want to take care of my daughter for as long as I 
     can,'' Julie Sauer said. ``I am not looking for money to pay 
     for someone to take care of my daughter, only help in finding 
     a place that will be equipped for special needs children in 
     our community.''


                         Shortage of employees

       Tom Davie, director of Community Education, oversees the 
     School-Age Child Care program, which serve some special-needs 
     children.
       ``Our challenge becomes one of having adequate staffing'' 
     he said. ``We have taken children who have not required one-
     to-one care. Many times, because of our numbers, School-Age 
     Child Care is not the best choice for a child with special 
     needs.''
       Arc Olmsted County used to provide a day care program for 
     children with special needs, but the organization 
     discontinued it, said Buff Hennessey, Arc's executive 
     director.
       About 3 percent of the population is identified as having a 
     developmental disability, she said.
       ``There are home health care agencies that provide PCA 
     services, although a couple are no longer providing services 
     to families with young people,'' she said. ``There are 
     reimbursement problems and then with the way the labor market 
     is. Our industry as a whole has a crisis shortage of 
     employees. There have been efforts to train additional 
     providers, but the numbers have been pretty limited.''
       Hennessey said some families have given up employment 
     opportunities to have one parent stay home with the special-
     needs child.
       That's not an option for the Sauers, both of whom work 
     full-time, they say.
       ``We want to raise her as much as we can,'' Bob Sauer said, 
     ``but our options are to put up with this or give her up 
     completely.''

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