The Beacon 
  
    


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November 2012  

 
The NC Family to Family
Health Information Center
A Project of the Exceptional Children's Assistance Center
Home to Family Voices of NC
 

  

November is National Family Caregivers Month


"This month and throughout the year, let the quiet perseverance of our family caregivers remind us of the decency and kindness to which we can all aspire." - President Barack Obama, 2011's NFC Proclamation 

How ironic that this month is National Caregiver Month! Yolanda and I are late getting this newsletter to you because both of us have been busier than usual, helping each of our children and parents through medical appointments, shopping and meals, and other routine and acute caregiving responsibilities. 

Let me share some startling information about the cost and impact of family caregiving with you! 
  • More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. Caregiving in the United States;National Alliance for Caregiving in collaboration with AARP; November 2009
  • The value of the services family caregivers provide for "free," when caring for older adults, is estimated to be $375 billion a year. That is almost twice as much as is actually spent on home-care and nursing home services combined ($158 billion). Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving;National Alliance for Caregiving and Evercare. March 2009
  • Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lowernon-caregiving families with members with a disability than among families without. Disability and American Families: 2000, Census 2000 Special Reports, July 2000
  • 64% of working parents caring for a special needs child believe that caregiving responsibility has negatively impacted their work performance. Care.com and Naational Family Caregivers Association: State of Care Index 2009
  • 78% of adults living in the community and in need of leng-term care depend on family and friends as their only source of help. Thompson, L. Long-term Care: Support for Family Caregivers 2004

"Day in and Day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients' medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen. National Family Caregivers Month is a time to thank, support, educate and empower family caregivers"

 

 

In This Issue
Palliative Care
Spotlight on Diabetes
About NC F2FHIC
How to Join a Webinar
                         Palliative Care

Palliative Care is specialized care that focuses on providing relief from the symptoms, pain and stress of a serious illness. Children and adults with chronic or life-threatening illness often undergo painful procedures and endure symptoms of advancing disease without adequate relief. Improving one's quality of life in the midst of grave illness is the goal of palliative care. 


A palliative care team includes specially trained doctors, nurses and social workers. The team partners with other doctors to give an additional layer of support to individuals and their families who need extra care to deal with medical treatments, loss of sleep, pain and other symptoms of their illness. Palliative care also helps one understand choices for care. Depending on local resources and personal choice, palliative care services occurs in hospitals, specialty centers and at home.


Spotlight on Diabetes

 

Millions of Americans suffer with diabetes. Diabetes is a group of diseases marked by high levels of blood glucose resulting from defects in insulin production, insulin action, or both. Diabetes can lead to serious complications and premature death, but people with diabetes, working together with their support network and their health care providers, can take steps to control the disease and lower the risk of complications.

 

There are two major types of diabetes. The causes and risk factors are different for each type:

 

 

Type 1 diabetes can occur at any age, but it is most often diagnosed in children, teens, or young adults. In this disease, the body makes little or no insulin. Daily injections of insulin are needed. The exact cause is unknown.

Type 2 diabetes makes up most diabetes cases. It most often occurs in adulthood. However, because of high obesity rates, teens and young adults are now being diagnosed with it. Many people with type 2 diabetes do not know they have it.

 

Diet, insulin, and oral medication to lower blood glucose levels are the foundation of diabetes treatment and management. Patient education and self-care practices are also important aspects of disease management that help people with diabetes lead normal lives. 

Family Voices Survey

 

Quality of care improves when health care providers listen to families. When families and health care providers work together, this is called family-centered care.

 

Family Voices is doing research to develop a way to measure whether health care providers are delivering family-centered care. You can help by taking an online version of a family-centered care assessment tool to test how well it works.

 

The assessment will take 15-20 minutes to complete and will:

  • Ask some questions about you and your child. (Nothing that will identify you or your child personally)
  • Ask about how your health care provider works with you and your child. (Your provider also won't be identified)

Tell us about your experiences:

 http://www.surveymonkey.com/s/FCCA-F-1a

 

 

 

Resources

 

National Family Caregiver's Association www.thefamilycaregiver.org  

 

Get Palliative Care  www.GetPalliativeCare.org

 

Caring Connections www.caringinfo.org

 

American Diabetes Association http://www.diabetes.org/

 

About NC F2FHIC

 

NC F2FHIC is a project of ecac, the Exceptional Children's Assistance Center and is funded by the US Department of Health and Human Services, Health Resources and Services Administration (HRSA). The goal of the NC F2FHIC is to help keep your child healthy by promoting regular medical care and to make the most of the benefits that are available for your child with special health care needs. 

The Family-to-Family Health Information Centers provide information and guidance to families raising children and youth with special health care needs (CYSHCN), professionals, and others around six national performance measures. These are 

  1. Families and professionals partner at all levels of decision-making.
  2. Families have access to comprehensive health and related services through the medical home.
  3. Children receive early and continuous screening, evaluation, and diagnosis.
  4. There is adequate public and/or private financing of needed services.
  5. Community services are organized so that families can use them easily.
  6. There is successful transition to all aspects of adult health care, work, and independence.)

 


How to Join us for a Webinar!

 
To join  a HIC webinar or for additional information, call Yolanda toll free at
1-800-962-6817
 ext 335.
There are two ways to participate in a webinar:

(1). You can join us as an individual at your computer listening  over the phone using our toll free number .

(2). Or, you could bring together parents and/ or staff and view the webinar as a group in a large room such as the media center or computer lab using a speaker phone.
 
If you have questions give us a call! 

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