Families with Special Needs. Breanna Carter Jamie Darling April Miller Kristin Mock Betsy Zimmerman

Transcription

1 Families with Special Needs Breanna Carter Jamie Darling April Miller Kristin Mock Betsy Zimmerman

2 Welcome to Holland

3 Introduction Under-representation in counseling community Experience with families Counseling benefits Families can feel isolated Support can be difficult Our role as counselors

4 Stages of Grief and Loss Giraffe and The Stages of Grief

5 Stages of Grief and Loss 1. Denial 2. Anger 3. Bargaining 4. Depression 5. Acceptance Reference: Kübler-Ross, E. (1997). On death and dying. New York: Scribner Classics.

6 The grief engendered by the death of a family member is acute and terminal, bounded by ritual and vocabulary. The grief experienced by the parent of a special needs child is chronic and unaccompanied by ritual. In an actual death, we bury the body. Chronic grief, however, is experienced on a daily basis. Parents are constantly reminded of their loss and there are many trigger events along the road of raising their child that remind the parents of what they have lost. These trigger events may be as simple as a birthday party or family gathering. It is at occasions such as these that comparisons to children who are typically developed are made, and the family's pain may be quite acute. Luterman, D. (2004). Counseling Families of Children with Hearing Loss and Special Needs. Volta Review, 104(4),

7 Cultural Implications The prevalence of reported dissatisfaction with care and problems with ease of using services among parents of Children with Special Health Care Needs (CSHCN) were 8% and 25%, respectively. Black and Hispanic parents were significantly more likely than white parents to be dissatisfied with care and report problems with ease of service use.

8 Cultural Implications Compare to children born of U.S. born parents, children in immigrant families are more likely to live in poverty, have parents that are lesseducated, have low wage employment with no benefits, and have limited language skills. Legal status of a Child s parent may also affect a Child s access and utilization. These parents may also be unaware of what kind of benefits are available for their children.

9 Counselors as Case Workers Managed care uses case management to restrict access to services as well as to facilitate access to services. Four Types of Case Management Broker/Generalist Strengths-Based Assertive Community Treatment Clinical Rehabilitation: Joins both therapy and service coordination.

10 Counselors as Case Workers It is a single point of contact for services. It is important for case manager to follow through with resources. Client-driven Advocacy Anticipatory

11 Case Studies

12 Zach (20 years old) Lennox-Gestaut Syndrome Zach was diagnosed at age 5 after with Lennox- Gestaut Syndrome suffering from multiple seizures. Suffers from three types of seizures, Atonic (loss of muscle tone/drop attacks), Absence (staring), and Myoclonic (muscle jerks). Diagnosis was extremely difficult due to the age and does not occur until behavioral changes occur. Zach is still covered under the military insurance and will continue to have coverage for the rest of his life.

13 The Future for Zach Zach will have to have continuous care and will never be able to live alone. Zach will have to continue with Occupational Therapy and continued education to work on maintaining his brain functioning. Continued use of medication. Continued use of the Vagus Nerve Stimulator Guardianship needs to be attained and set up a secondary guardian in case something happens to his parents.

14 Lennox-Gestaut Syndrome It is a rare from of Epilepsy that occurs in.3 of 1,000 births (.03% of children). 1/3 of those diagnosed have no known cause. Occurs most often boys than girls. One year after the Vagus Nerve Stimulator is implanted, seizure activity can be reduced up to approximately 50%. A Ketogenic Diet can assist in reducing seizures for some more milder cases.

15 Meet Zach

16 Jeremy (25 years old) Traumatic Brain Injury At age 24, Jeremy fell 15 feet from a ladder and suffered a traumatic brain injury (TBI). He was in a coma for 10 days, and could not eat or breathe on his own for months, and part of his skull was removed to reduce pressure on his brain. Anna, his wife of about a month, quit her job and moved to where he was for ICU care; they lost the house they had just purchased. Anna and Jeremy do not have insurance. When he was able to leave the hospital, they moved in with Anna s parents and younger brother. He receives outpatient treatment from a local rehabilitation clinic multiple times a week. Jeremy s future will consist of physical and occupational therapy until he can learn to care for himself, in hopes to return to his functioning to how it was before the accident. Eventually, his skull flap will be replaced.

17 TBI Statistics 87% of people who suffer from TBIs are male Average age of TBI victim at time of injury is 30 years 71% of TBI patients suffer from extremely severe posttraumatic amnesia 67% of TBI incidents are road-related Average of years lived after incident is 4 years 60% of TBI victims are cared for by his or her parents; 27% are cared for by a spouse In a case study of families of people suffering from TBIs (using a 25-item measuring scale [score range ]): Family members with higher resilience scores reported more positive effects than families with lower resilience scores Family members with higher resilience scores reported less negative effects and career burden than families with lower resilience scores Family resilience was independent of the functional status of the patient

18 The Future for Jeremy Jeremy s future will consist of: Physical, speech, and occupational therapy until he can learn to care for himself, in hopes to return to his functioning to how it was before the accident. Eventually, his skull flap will be replaced. He will be placed on antibiotics to prevent infection into his brain.

19 Meet Jeremy

20 Ella Grace (8 Months) Down Syndrome Ella Grace was born on November 19, 2012 and was unexpectedly diagnosed with down syndrome. (Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome) Within a few hours of being born, she was also diagnosed with Transient Myeloproliferative Disorder, a rare form of Leukemia restricted to infants born with down syndrome Because Ashlyn works for Research Hospital, insurance coverage is exceptional, but did not cover all costs.

21 The Future for Ella Grace Physical therapy upper body strength, neck tilting and strength Occupational therapy Hand-eye coordination Low muscle tone, and early intervention Speech therapy Sign language, and communication

22 Down Syndrome Statistics Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome 10% of babies born with downs syndrome have TMD High rate of spontaneous resolution; usually resolves in 2-14 weeks in neonates, but 20-30% progress to AML-M7 [FAB] (acute megakaryoblastic leukemia) within 3 years From 1979 to 2003, the prevalence (total number of cases of a disease in a population at a specific time) of Down syndrome (DS) at birth increased by 31 percent, from 9 to 12 per 10,000 live births in 10 US regions. 1/733 babies are born with Down syndrome There are more than 400,000 people living with Down syndrome in the United States. Down syndrome occurs in people of all races and economic levels. Life expectancy for people with Down syndrome has increased dramatically in recent decades from 25 in 1983 to 60 today. 80% of babies with Down syndrome are born to women under the age of 35

23 Meet Ella Grace

24 Hanna (21 years old) Cerebral Palsy Hanna was diagnosed with Cerebral Palsy shortly after she was born; due to her not receiving enough oxygen to her brain during her delivery. Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain, most often before birth. Signs and symptoms appear during infancy or preschool years. In general, cerebral palsy causes impaired movement associated with exaggerated reflexes or rigidity of the limbs and trunk, abnormal posture, involuntary movements, unsteadiness of walking, or some combination of these. The effect of cerebral palsy on functional abilities varies greatly. Hanna is currently covered by her father s insurance. Hanna is also 21 so she has been eligible for disability checks for a couple of years now which also help pay for her treatment and other medical expenses.

25 Future for Hanna Hanna will have to have continuous care and will never be able to live alone. Hanna will have to continue with Occupational Therapy. Hanna will continue with extra curricular activity. Continued use of medication. Hanna currently has an assisted care assistant who comes to her house everyday. Eventually Hanna will have to live in a assisted living facility.

26 Statistics for Cerebral Palsy There were 142,338 8-year-old children in the population from Alabama, Georgia, Missouri, and Wisconsin, representing approximately 4% of the U.S. population of 8-year-olds. CP prevalence was significantly lower among Hispanic children than among Black or White children. The prevalence among White and Black children varied across the states. Spastic CP was the most common type of CP, found among approximately 80% of children with CP. CP, on average, occurred 1.2 times more frequently among boys than among girls.

27 Meet Hanna

28 Professional Interview Dr. Lee Ann Scott, Ph. D., Licensed Psychologist East Georgia Counseling Services Primary Psychological Services Provided: Psychological testing and evaluation Play therapy Individual therapy Family therapy Parent training and coaching

29 Populations served: Children birth to 18 with behavioral, learning or psychological difficulties Adults with psychological issues Parents of children with psychological, behavioral or learning issues

30 Challenges faced by families Understanding the child s diagnosis and the issues that accompany the diagnosis Managing behavior in the community and at home Obtaining appropriate and adequate services Managing conflicting information from various professionals Understanding and accepting impact of the diagnosis on the future of the child and family There is an added challenge faced by professionals when the parents also have psychological and or other disabilities which make it difficult for them to understand the complex issues of their children.

31 Community agencies and resources available to families with special needs Community resources and agencies DFCS Psychiatrists Local state MH agencies Psychiatric hospitals Pediatricians or General Practitioners Speech-language Therapists Occupational and Physical Therapists Social Workers Online Support Communities

32 Family Play Therapy Play Therapy and Filial Play Therapy Using Play Therapy to explore presenting problems Criticisms of Filial Play Therapy Role of the therapist Play Therapy Interventions

33 Play Therapy Interventions Family Sandtray The Forever Gift Scribble Technique Human and Lovable All resources from Trudy Post Sprunk, LPC, RPT-S, LMFT

34 References References are available as a part of the written portion of the presentation.