I was invited by one our Pacific Islander leaders Dr. Sela Panapasa, Assistant Research Scientist at University of Michigan, to the 1st Native Hawaiian and Pacific Islander Health Disparity & Health Equity Conference. The two day conference was held in Los Angeles from Monday, September 24 through Tuesday, September 25, 2012, bringing together Native Hawaiian and Pacific Islander (NHPI) people from the continent, Hawaii, and the U.S. associated Pacific Islands, as well as community stakeholders, advocates, policy makers, philanthropic leaders, researchers, and students.
The conference theme was “Envision the Future: Translating Research into Healthy Native Hawaiian and Pacific Islander Communities,” and during our opening ceremony Dr. Sela talked about how we can come together as a Native Hawaiian and Pacific Islander to help each other on health issues that we face in our communities around the nations. Our next speaker which was our keynote speaker for the day was Honorable Howard K. Koh, Assistant Secretary for Health, U.S. Department of Health and Human Services. Dr. Howard, mentioned in his remarks that he will do everything he can to help the NHPI communities to be in better health. “Native Hawaiian and Pacific Islander Health Disparities & Health Equity I” , “Translating Research into Healthy Communities”, and “State Department of Health Programs and Strategies to Eliminate NHPI Health Disparities and Contribute to Health Equity” were the topics for the plenary after the opening ceremony. After our plenary we split into four groups for our breakout sessions. “Leading Health Issues and Understudied Health Conditions Confronting NHPI Communities” was the name of the one I attended and the speaker for this group was Justina Langidrik, Republic of Marshall Islands Ministry of Health Secretary. I was one of the speakers in the “Healthcare Access and Utilization” and my goal was to talk about the healthcare access in the Marshallese communities in Northwest Arkansas and explain to my audiences why Marshallese are not eligible for federal program to get better access to healthcare.
Even though it was only two day conference, I believe we gained lot of information about the direction we are heading with the NHPI health disparities. Dr. James S. Jackson, Director and Research Professor at University of Michigan, stated in his closing remark “This conference will help to promote the collaboration, strong leadership, and commitment needed to move forward to eliminate NHPI health disparities”. I have faith that all conference attendees (my brothers and sisters in the Pacific) will be inspired and will use the presentations to guide them in helping to create a future that will bring benefits to all the Pacific People.
--Albious Latior, Marshallese Families Out Reach Coordinator
“A boy stands quietly as his older sister screams and draws attention in the store. He stands motionless as his sister continues to have “one of her moments” while Mom tries to calm her, all the while people walk by staring and whispering under their breath. He stands a pillar of emotions churning in him; feeling embarrassment, guilt, anger, jealousy and possibly resentment”.
-10 year old sibling of 14 year old with autism
The balancing act of parenting more than one child is a hard task, not to be taken lightly, but when one child has a disability, that balancing act becomes harder.
Although the needs of the child with disability are never far from a parent’s mind, the needs of the child or children without the disability can be easily over looked by the parents. It is therefore important to make sure that the needs of children without disabilities are not in second place.
Here are two basic things a parent should do to help their child understand that they are as much in their parent’s mind as their brother/sister with the disability.
Maintain open lines of communication:
· This includes parents educating their child about their brother’s or sister’s disability; presenting information in a way that match their own developmental needs and ability. For example a 5 year old may need to understand that they are not the cause of their sibling’s disability and that the disability is not contagious.
· Share your challenges with each other. Allow a time where your child without a disability can express their feelings and empathize with the child. Share with them some of your own struggles and feelings. This will help the child know that any feeling of frustration or embarrassment can be normal and they will not feel guilty for their feelings. Remember communication is a two part activity: Speaking and Listening
"Allowing them to express their frustrations and negative feelings related to having a sibling with special needs is often difficult for parents because of their own angst and desire to meet all of the needs of all of their children, but it is crucial in helping 'typical' children feel understood and important." says Leslie Petruk, M.A., LPC, NCC, a therapist and mom to a child with special needs and two without.
· Set aside an uninterrupted regularly scheduled one-on-one time to spend with each child. Make sure that they feel that this is their “special time” with their parent.
· It is not always the activity that is important but the attention that the child receives. Examples may be going out on small parent/child dates to a movie or even just having “small talks” alone before bedtime.
"One of the best ways to help minimize emotional challenges for your typical child is to make sure they are not neglected and get the time and attention they need from you," - Leslie Petruk, M.A., LPC, NCC
“Special needs kids and well siblings” She Knows Parenting. Retrieved on August 7, 2012, from http://www.sheknows.com/parenting/articles/2128/special-needs-kids-and-well-siblings
Burns, A (Apr 17, 2012) “Parenting a disabled child: When another child isn't disabled” She knows Parenting. Retrieved on August 8, 2012, from http://www.sheknows.com/parenting/articles/956459/parenting-a-child-with-a-disability
Kutner, L. (2012). When A Sibling Is Disabled. Psych Central. Retrieved on August 9, 2012, from http://psychcentral.com/lib/2007/when-a-sibling-is-disabled/
Rosen, M. (Nov 19, 2011) “Family: Finding the right balance with disabled children” The Press-Enterprise. Retrieved on August 9, 2012, from http://www.pe.com/local-news/columns/mitchell-rosen-headlines/20111120-family-finding-the-right-balance-with-disabled-children.ece
Under the requirements of IDEA (the Individual’s with Disabilities Education Act), schools must begin the planning for a student’s transition on the IEP that will be in place when the student turns 16. This means the planning must begin when the student is 15, if he or she will turn 16 during that year. Many of us who work with students with disabilities believe this is really on the late side and that this planning should actually begin much earlier—probably by middle school age.
The process for transition is specified under the law and must include documentation that the student’s interests, abilities and desires are taken into account. This means your son or daughter must have the opportunity to provide input into the plan by letting the school staff know what he or she wants to do past graduation. You, as the parent of the student, are also a crucial part of the team and should be included in the planning and process as the student moves toward graduation.
There is a requirement that other agencies be involved in this planning—chief among them would be Rehabilitation Services and also providers of services to adults with disabilities. It is also wise to have your parent center representative present during these meetings to provide you with continuing information regarding the process, and also with regard to holding the various players accountable for their roles in transition. If you do not have a parent center representative, please call us at 479-927-4100 and ask for the Family Support office, or email us at firstname.lastname@example.org.