Our adoptee’s biological parents are
Pam and Brian Smith. The name of their
daughter is Michelle Smith. The parents are
divorced now and their education stopped while in high school. Pam and Brian Smith’s income is sparse since
they are both unable to find good paying jobs without a high school education. Their
current socioeconomic status is in the bottom fifth, meaning the Smith’s make
no more than $20,000 a year. Michelle
was born prematurely, with a low birth weight, and Down syndrome.
When Pam and Brian found out they
were pregnant, they were incredibly excited; however, they were uninsured. The costs of doctors visits and regular check
ups for the baby became expensive, but they made sure they did all they could
to have the healthiest pregnancy term possible.
That was until Pam went into labor at 28 weeks because of an extreme
fever, giving their daughter a 50% chance of survival. This placed newborn Michelle in the NICU (Danielsson,
2014). Because of her low birth weight and prematurity her heart and lungs were
not quite ready for independence from mom.
Michelle had a heart issue and fluid in her lungs that kept her for an extra
two and a half weeks. The heart issue
Michelle had is common in Down syndrome babies, it is known as Tetralogy of
Follet, meaning that she has a heart condition with four abnormalities present:
ventricular septal defect, a narrowing of the passage from the right ventrical
to the lungs, an over enlarged right ventrical because of the backup of blood, and
an over enlarged aorta (which carries blood from the left ventrical to the body
baby). Because of the Tetralogy of
Follet affecting baby Michelle, the doctors scheduled open-heart surgery for
her when she turns six months old. This
time was expensive, but Pam and Brian were willing to do anything they could. However, accepting that their beautiful baby
had an extra chromosome was hard for Dad.
Pam Smith used the Early Intervention for Infants and
Toddlers with Disabilities, which helped cover costs for screenings for things
like vision and hearing. Pam was
required to stay at home with Michelle while using the IFSP, leaving Brian
working his minimum wage or less job to support the family. Michelle had a poor immune system which caused
multiple throat and ear infections while she was young. It was difficult to get Michelle to eat
because she had issues with oxygenation—when a baby cannot breathe, it cannot
eat. The first six months were a huge
challenge for Pam and Brian and caused dissension between them because of the
drastic changes they had to make for their first child who had so many
unfortunate health issues. Brian was
reluctant to accept the diagnosis of his child with Down syndrome, while his
wife began researching and discovered that individuals with Down syndrome are
just slower at learning and developing but has great potential for a great life. For the rest of Michelle Smith’s life we must
also take into account that it is becoming increasingly more difficult to move
up the income spectrum for those born into lower socioeconomic status (Leonhardt,
2005).
1.
What is the approximate cost for time spent in the NICU? How would the family
pay for this? Remember that they are uninsured. What are the procedures for a newborn becoming eligible
for Medicaid?
2.
What agency or organization provides the Early Intervention service? What other
supports are available for the family? What other supports would you recommend?
3.
The narrative does not mention family and friends. Assume that the Smiths have
some family nearby and ask for help to give mom some time to recharge. Given
Michelle’s challenges, how might she be expected to attach to her parents?
DECISION
POINT: Does Brian find another job to support the family and the medical
expenses, or does he continue with his sole job?
Citations:
Danielsson,
K. (2014, June 13). Premature Birth and Viability At What Point in Pregnancy
Can a Baby Survive Premature Birth?. Retrieved June 17, 2014, from http://miscarriage.about.com/od/pregnancyafterloss/a/prematurebirth.htm
Leonhardt,
D. (2005, May 14). A Closer Look at Income Mobility. . Retrieved June 17, 2014,
from http://www.nytimes.com/2005/05/14/national/class/15MOBILITY-WEB.html
1. What is the approximate cost for time spent in the NICU? How would the family pay ? Remember that they are uninsured. What are the procedures for a newborn for Medicaid?
ReplyDeleteThe average daily cost of NICU care in the United States exceeds $3,000. The parents may for Medicaid but baby Michelle would most likely qualify for the children's health program (CHIP). Children in families with incomes up to $47,700/year (for a family of ) are likely to be eligible for coverage. In many states, families can have higher incomes and children can still qualify. Each state designs its own CHIP program, including eligibility, cost-sharing, and application and renewal procedures. States can decide the benefits provided under CHIP, but all states cover regular check-ups, immunizations, care, dental care, and lab and x-ray services. Children get free preventive care, but
premiums and other cost-sharing may be required for other services. Pam and Brian may qualify for Medicaid. All States provide Medicaid to infants and children under age 6 with incomes up to 133% of the federal poverty level, or FPL. Medicaid pays for a full set services for children, including preventive care, immunizations, screening and treatment of conditions, doctor and hospital visits, and vision and dental care. In most cases, these are provided at no cost to families. Medicaid plays a key role in child and maternal, financing 40% of all births in the United States. Medicaid coverage for pregnant women
prenatal care through the pregnancy, labor, and delivery, and for 60 days postpartum as as other pregnancy-related care. Pam and Brian should check with a social worker to see if the costs will be covered or if there are still expenses that will have to be paid out of pocket. If isn’t enough the family could look into information about and applications for Supplemental Income (SSI). Michelle may be eligible for SSI, based on his or her medical history and
financial resources (Medicaid, 2014).
2. What agency or organization provides the Early Intervention service? What other supports are available for the family? What other supports would you recommend?
ReplyDeleteEarly intervention is a systematic program of therapy, exercises and activities designed to address developmental delays that may be experienced by children with Down syndrome or other disabilities. These services are authorized by a federal law called the Individuals with Disabilities Education Act (IDEA). This law obligates states to provide early intervention services for all children who qualify, with the end goal of improving the development of infants and toddlers and helping families comprehend and meet the needs of their children. The most common early intervention services for babies with Down syndrome are physical therapy, speech and language therapy, and occupational therapy (NDSS, 2014).
A family is a dynamic stem of interdependent parts that is virtually characterized by change. Change in one part of the system results in change in other parts of the system and as a whole. Change is not only necessary in families but it is inevitable. Pam and Brian Smith were probably expecting to have a healthy baby yet there was a change in plans. They found out that their baby was going to have Down Syndrome which can come with multiple side effects. Coping, accepting and adapting to this kind of news can be very difficult for families. Raising a child with special needs can be very difficult because their needs places stress on the family system and this normally changes the family dynamic. The initial fear of knowing how to raise a child can be very emotionally taxing. If the parents join a support group they would be able to discuss similar concerns that other parents have as well such as medical complications, teasing of the child, lack of services and disappointment when goals are not reached. Resources that facilitate coping include the psychological, social, interpersonal, and material characteristics of the family, the individual members, and the community. The three most common resources are time, money and support. The more resources, the less stress. supports such as behavioral parent training to help the parents know how to manage their child’s behavior, marital counseling to keep the strength of the parents together so that they can work together in the process of raising their child, behavioral family therapy, and a Down Syndrome Parental support group in the community so that the parents an share and learn about struggles and accomplishments from other parents in a similar situation (Berry, 1998).
3. The narrative does not mention family and friends. Assume that the Smiths have some family nearby and ask for help to give mom some time to recharge. Given Michelle’s challenges, how might she be expected to attach to her parents?
ReplyDeleteThere are three types of attachment according to Mary Ainsworth. They are Secure Attachment, Anxious-Ambivalent Insecure Attachment, and Anxious-Avoidant Insecure Attachment (Ainsworth, 2012). There is no information that I found regarding the type of attachment styles of typical children versus down syndrome. Research conducted with children with Down syndrome suggests that although differences in attention regulation and emotional responsively may modify the developmental processes in some respects, the general patterns are similar to those in typically-developing children (Oates, 2014)
DECISION POINT: Does Brian find another job to support the family and the medical expenses, or does he continue with his sole job?
Expense of raising a child with a disability
Brian should definitely look into finding a new job that pays better or look into working two jobs in order to support the family. There are many expenses that come with raising a child and even more when raising a child with disabilities. With less than a high school education, it would be wise for Brian to work for his GED while working his one job before the baby is born. That way there would be more opportunities for jobs that might pay better than the one he currently has. Depending on where Brian lives, the availability of jobs may be low. If this is the case, he could look into working for a temporary agency until more positions opened up elsewhere. It would also be wise for Pam to keep working until she is unable so that they have as much income as they can before the baby is born. Brian and Pam should visit a family planning center that would be able to help them manage their money and lay out a plan of how to pay for all the necessary bills and services.
References
Berry, J. O. (1998). Families as Systems. Lifespan perspectives on the family and disability. Boston: pro-Ed, INC.
Early Intervention. (2014). - National Down Syndrome Society. Retrieved from http://www.ndss.org/Resources/Therapies-Development/Early-Intervention/
Mary Ainsworth and Attachment Theory. (2012). Child Development Media Inc. Retrieved from http://www.childdevelopmentmedia.com/mary-ainsworth-and-attachment-theory.html
Oates, J., Bard, K., & Harris, M. (2014). Social and communicative functioning.Down Syndrome Education International. Retrieved from http://www.down-syndrome.org/reviews/2073/
What is Medicaid?. (2014). U.S. Department of Health and Human Services.. Retrieved from http://www.insurekidsnow.gov/medicaid/index.html