New Down syndrome law ensures moms-to-be greater access to available help
By Campbell North / Pittsburgh Post-Gazette
Ever since her birth, Chloe Kondrich has taken her family on an unexpected journey. Chloe, born with Down syndrome in 2003, has now led the family up the steps of the State Capitol.
This morning in Harrisburg, Gov. Tom Corbett is expected to sign the Down Syndrome Prenatal Education Act, otherwise known as Chloe’s Law, named after the Upper St. Clair 11-year-old and spearheaded by her father.
The legislation, which passed with a rare bipartisan vote, 50-0 in the Senate and 196-4 in the House, requires health care providers to make a woman who receives the prenatal diagnosis of Down syndrome — a common genetic disorder that comes with mild to moderate developmental delays — aware that they can receive a full range of factual and supportive information through the Pennsylvania Department of Health.
Information includes physical, developmental, educational and psychosocial outcomes as well as contacts for relevant resource centers, clearinghouses, support services and First Call programs. One service available is the state-funded early intervention program, which provides in-home service and therapy through qualified specialists.
Shortly after her parents discovered Chloe’s condition they devoted themselves to early intervention efforts to help her physical and mental development and became advocates for other children and families whom Down syndrome affects.
Her father, Kurt, left a career in law enforcement to work full time on advocacy efforts and is now on the Interagency Coordinating Council for Early Intervention.
Her mother, Margie, credits Chloe for helping her brother Nolan, 15, know unconditional love and patience at such a young age.
“I don’t want any expectant mother to feel that pain or confusion when they get a prenatal diagnosis. I want this law to give women hope,” Mrs. Kondrich said. “Chloe was a blessing.”Unconditional love in childhood is very important but it must come from the parents, first and foremost. A sister is not a lesson in Christian values, she is a person. If the brother is being told that he can't have negative feelings towards his sister, he is just learning to repress his own needs for his parents' needs to find God's goodness in their difficulty.
Kishore Vellody, medical director of the Down Syndrome Center at Children’s Hospital of Pittsburgh of UPMC, echoed Mrs. Kondrich’s sentiment, saying he sees the necessity of the new law, which will outline physicians’ responsibilities in delivering the news of a Down syndrome prenatal diagnosis.
“Published data shows that less than half of people felt like their training was accurate in communicating prenatal diagnosis,” he said. “Even in my med school textbooks, a lot of things we learned about Down syndrome was inaccurate because it takes so long to have them updated.”
Within the past 30 years, the increase in information and standard medical care has been dramatic and is mirrored by the increase in life expectancy for people with Down syndrome, from 25 in the 1980s to 60 and beyond now.
“Our goal in medicine is to make sure people receive balanced and accurate information when they make decisions about health care,” Dr. Vellody said. “That’s why we support endeavors to help expectant parents.”
Mr. Kondrich spearheaded the advocacy effort for the legislation in September after discovering that more than 90 percent of women terminate their pregnancy after receiving a prenatal diagnosis for Down syndrome.If you tell someone that their child will almost certainly outlive them but will still be in a state of child-like innocence and trust, that is not a good thing. That is exactly what would strike terror in a parent's heart. Obviously there is nothing bad in this law but the anti-abortion aspects of it are also obvious. This is the first step. There will be others. A waiting period, required classes, pressure, guilt, a greater burden instead of a lighter one.
Down syndrome occurs when someone is born with a full or partial extra copy of chromosome 21 and results in distinct physical traits, increased risk for certain medical conditions and mild to moderate cognitive delays.
However, “the more I interact with someone who has Down syndrome, the more I think I am the one who has one chromosome less, instead of them having one extra,” said Dr. Vellody. “They tend to be loving, caring and forgiving — features we are missing a lot in general society.”Tell a woman she has to raise a child to pay for society's sins. That'll work.
The Kondrich family agreed. Down syndrome as a diagnosis doesn’t limit what Chloe can do.
“She met Gov. Corbett and read to him. I mean she helped change a state law, helped make it a better place,” Mrs. Kondrich said.
Chloe has also been reading since age 3 and reads at the same level of her sixth-grade peers at Boyce Middle School.Mrs. Kondrich must find meaning where there is none, a blessing in a genetic error. It's how she survives. Come back in 30 years and see what she says then.
State Rep. Jim Marshall, R-Big Beaver, prime sponsor for the act, said, “We hope this will raise awareness to parents who may get the diagnosis and be initially afraid of what the result will be. I think it will raise awareness that their kid is going to be different, not imperfect. There really isn’t anything more perfect than a happy child.”I find it very hard to believe that a kid is never unhappy. There's a pretty picture in pro-life peoples' minds of obedient, good-natured, sweet children with Downs Syndrome but that does not seem realistic. Kids have a full range of emotions. Youth or innocence or developmental delay does not equal sweetness and light. In fact:
What Are Some Behavioral Challenges Typical In Persons with Down Syndrome?
The definition of a "behavior problem" varies but certain guidelines can be helpful in determining if a behavior has become significant.
##Does the behavior interfere with development and learning?
##Are the behaviors disruptive to the family, school or workplace?
##Is the behavior harmful to the child or adult with Down syndrome or to others?
##Is the behavior different from what might be typically displayed by someone of comparable developmental age?
The first step in evaluating a child or adult with Down syndrome who presents with a behavior concern is to determine if there are any acute or chronic medical problems related to the identified behavior. The following is a list of the more common medical problems that may be associated with behavior changes.
##Vision or hearing deficits
##Thyroid function ##Celiac disease
Evaluation by the primary care physician is an important component of the initial work-up for behavior problems in children or adults with Down syndrome.
The behavioral challenges seen in children with Down syndrome are usually not all that different from those seen in typically developing children. However, they may occur at a later age and last somewhat longer. For example, temper tantrums are typically common in 2-3 year olds, but for a child with Down syndrome, they may begin at 3-4.
When evaluating behavior in a child or adult with Down syndrome it is important to look at the behavior in the context of the individual's developmental age, not only his or her chronological age. It is also important to know the individual's receptive and expressive language skill levels, because many behavior problems are related to frustration with communication. Many times, behavior issues can be addressed by finding ways to help the person with Down syndrome communicate more effectively.
What Are Some of the Common Behavior Concerns?
Wandering/running off The most important thing is the safety of the child. This would include good locks and door alarms at home and a plan written into the IEP at school regarding what each person's role would be in the event of the child leaving the classroom or playground. Visual supports such as a STOP sign on the door and/or siblings asking permission to go out the door can be a reminder to the child or adult with Down syndrome to ask permission before leaving the house.
Stubborn/oppositional behavior A description of the child or adult's behavior during a typical day at home or school can sometimes help to identify an event that may have triggered non-compliant behavior. At times, oppositional behavior may be an individual's way of communicating frustration or a lack of understanding due to their communication/language problems. Children with Down syndrome are often very good at distracting parents or teachers when they are challenged with a difficult task.
Individuals with Down syndrome can have ADHD but they should be evaluated for attention span and impulsivity based on developmental age and not strictly chronological age. The use of parent and teacher rating scales such as the Vanderbilt and the Connors Parent and Teacher Rating Scales can be helpful in diagnosis. Anxiety disorders, language processing problems and hearing loss can also present as problems with attention.
Obsessive/compulsive behaviors These can sometimes be very simple; for example, a child may always want the same chair. However, obessive/compulsive behavior can also be more subtly repetative, manifesting through habits like dangling beads or belts when not engaged directly in an activity. This type of behavior is seen more commonly in younger children with Down syndrome. While the number of compulsive behaviors in children with Down syndrome is no different than those in typical children at the same mental age, the frequency and intensity of the behavior is often greater. Increased levels of restlessness and worry may lead the child or adult to behave in a very rigid manner.
Autism Spectrum Disorder Autism is seen in approximately 5-7% of individuals with Down syndrome. The diagnosis is usually made at a later age (6-8 years of age) than in the general population. Regression of language skills, if present, also occurs later (3-4 years of age). Potential intervention strategies are the same as for any child with autism. It is important for signs of autism to be identified as early as possible so the child can receive the most appropriate therapeutic and educational services.
How Should Parents and Caregivers Approach Behavior Issues in Individuals With Down Syndrome?
1.Rule out a medical problem that could be related to the behavior.
2.Consider emotional stresses at home, school or work that may impact behavior.
3.Work with a professional (psychologist, behavioral pediatrician, counselor) to develop a behavior treatment plan using the ABC's of behavior. (Antecedent, Behavior, Consequence of the behavior).
4.Medication may be indicated in particular cases such as ADHD and autism. Intervention strategies for treatment of behavior problems are variable and dependent on the individual's age, severity of the problem and the setting in which the behavior is most commonly seen. Local parent and caregiver support programs can often help by providing suggestions, support and information about community treatment programs.
Psychosocial services in the primary care physician's office can be used for consultative care regarding behavior issues. Chronic problems warrant referral to a behavioral specialist experienced in working with children and adults with special needs.
What About Behavioral Changes in Adulthood?
These can be caused by a number of factors: difficulty with transitions into adolescence or young adulthood, with the loss of social networks, departure of older siblings, death of loved ones, move out of the home or transfer from a protective school environment into a work situation; sensory deprivation, either visual (e.g. cataracts) or auditory (hearing loss); emotional trauma; hypothyroidism; obstructive sleep apnea; depression; and Alzheimer’s disease. While Alzheimer’s disease occurs earlier and more often in adults with Down syndrome than in the general population, not every behavioral or cognitive change in an adult with Down syndrome should be ascribed to this form of dementia.
The reversible causes enumerated above should be considered, sought after and treated.
*** NDSS thanks special guest author Bonnie Patterson, MD for preparing this piece. - See more at: http://www.ndss.org/Resources/Wellness/Managing-Behavior/#sthash.nFbppAvz.dpufI don't see how any right-to-lifer will be able to stop with an information packet or a few words from a nurse or doctor. They will work on outlawing these abortions and they won't stop until they get it.
The parents are the ones who must live with the decision so the parents must be the ones who make the decision, without pressure from anyone else.
When pro-lifers start voting to increase social services we can start believing that they are just trying to help.