BY LAUREN AGORATUS
I wrote this manual to help other families of individuals with special needs and the professionals who work with them. My daughter now has five life-threatening conditions, and autism just to keep things interesting. We have been through everything from early intervention to currently going through transition to adult care. I hope this helps you on your journey. Part VI follows; to review Parts I – V, see the September through February issues of EP magazine.
Vision care is an essential component for overall health. Children with poor eyesight may experience headaches, or miss out academically in school. In NJ, the Commission for the Blind & Visually Impaired of the Department of Health does free screenings and also works with schools on IEPs for low vision tools like slantboards, etc. An overview is found at www.state.nj.us/humanservices/cbvi/services/prevention/screening/ and more information
specifically about services for children is available at www.state.nj.us/humanservices/cbvi/services/services/
Due to the importance of vision care to overall health, one of the 10 Essential Health Benefits under the Affordable Care Act is pediatric vision care. NJ FamilyCare also covers eyeglasses. Some families may still not have vision coverage, but there are programs that can help. These include:
New Eyes for the Needy – free vision care
WELLNESS – GENERAL
There are other general resources on prevention and wellness that are beneficial to families of children with special needs. For the children themselves, Bright Futures has an activity book for children available in English and Spanish at http://brightfutures.aap.org/pdfs/BFActivityBook_L%200626.pdf?Site=nf.aap.org&WebKey=68530b27-2adb-43ae-9c87-2fa20cb86cae&url_keyword=Bright+Futures+Activity+Book. The book has pages to color, information on nutrition and activities, dental care, etc. Family Voices has “Family Matters: Promoting Health & Wellness for Children with Special Health Care Needs Family Booklet at https://org2.salsalabs.com/o/6739/images/family_matters_book.pdf or Spanish at www.familyvoices.org/page?id=0005. This booklet helps parents with nutrition, physical activity, and reducing “screen time”— the time kids spend in front of computers, videogames, TV, etc. For self-advocates, the Centers for Disease Control and Prevention “People with Disabilities: Living Healthy” website, at www.cdc.gov/features/disabilities/, discusses resources on healthy living for individuals with special needs.
Abuse/Trauma: Children and adults with special needs are more likely to experience trauma and abuse. Resources for support for families that are available include:
Family Success Centers (crisis prevention)
Parents Anonymous (strengthening families)
Institutional Abuse (restraints/aversives/seclusion)
Building family skills and preventing crisis is the key to success. Also, getting help when needed is essential for individuals with special needs.
Alternative and Complementary Medicine: There are some other health related concerns for families of individuals with special needs. For example, according to the National Institutes of Health, almost 12% of all children have been given an alternative medicine product. For children with multiple medical conditions, the number is almost double at close to 24%. Alternative medicine use for children with autism climbs to 40% (www.healthline.com) It is essential that families inform their healthcare providers of any therapies, herbs, vitamins etc. they are using, as it may affect other health care such as prescription medication. The U.S. Department of Health & Human Services, National Institutes of Health created the National Center for Complementary and Alternative Medicine (NCCAM) to research which complementary therapies are being proven effective. Here, families and professionals can research conditions, such as allergies, or treatments, such as acupuncture. This information can be found at http://nccam.nih.gov/health/atoz.htm. Although the Spanish version doesn’t have A-Z topics, they do have
guidelines “Are You Considering Complementary Medicine? at http://nccam.nih.gov/node/3858. Family-to-Family Utah also has an excellent factsheet “Alternative Therapies” at www.utahfamilyvoices.org.php5-5.dfw1-2.websitetestlink.com/wp-content/uploads/2010/12/AlternativeTherapies.pdf.
General: There are various resources for families of individuals with special needs if they need more information or assistance. Family-to-Family Health Information Centers can be found at https://org2.salsalabs.com/o/6739/images/F2FBrochure_07-11-2011.pdf and Family Voices state organizations may be located at www.familyvoices.org/admin/miscdocs/files/FV_Brochure_English.pdf or Spanish www.familyvoices.org/admin/miscdocs/files/FV_Brochure_Spanish.pdf. These are nonprofit organizations run by families of children with special needs to help other parents. NJ was the first state to have the Parent Training and Information Center(PTI), Family Voices/Family-to-Family Health Information Center (FV/F2FHIC), and Parent-to-Parent (P2P)—in one location at the Statewide Parent Advocacy Network(SPAN)—to have one-stop shopping for free help for parents in education (PTI), Health (FV/F2F), and Support (P2P). The Family WRAP (Wisdom, Resources, Advocacy, Parent-to-Parent support) information at www.spanadvocacy.org/content/family-wrap-project-care (for Spanish click on “translate”) explains these projects with links to each. SPAN is also the home for the Integrated Systems of Care for Children with Special Needs with more information at www.spanadvocacy.org/content/integrated-systems-children-special-needs (for Spanish click on “translate”) Here families will find information on the Maternal & Child Health six core outcomes of screening, medical home, community services, paying for care, transition to adult care, and family involvement. Family Voices national also has “What Do Families Say About Health Care for Children with Special Health Care Needs?” available at www.familyvoices.org/admin/miscdocs/files/National-Famrpt-1.pdf or Spanish www.familyvoices.org/admin/miscdocs/files/National-Famrpt-Spanish-1.pdf.
The Waisman Center has an excellent publication “Finding Your Way A Navigation Guide for Wisconsin Families Who Have Children and Youth with Special Health Care Needs and Disabilities” available at www.waisman.wisc.edu/cedd/pdfs/products/community/FYW_e.pdf or Spanish www.waisman.wisc.edu/cedd/pdfs/products/community/FYW_s.pdf. Another guide from Family Connection is “Roadmap to Success” at www.familyconnectionsc.org/resource-roadmap.html The Wisconsin Council on Developmental Disabilities has a “Healthcare Toolkit” at www.wi-bpdd.org/publications/2010/Health%20Care%20Tool%20Kit%20Web.pdf The National Arc has free webinars “Health Meet” on various topics and they are also archived to access anytime at www.thearc.org/page.aspx?pid=3686 Lastly, the American Academy of Pediatrics has “Healthy Children” which is their family website and includes resources for special needs. Topics such as what to expect at what age, health conditions, and safety are on the site. It is available at www.healthychildren.org or Spanish www.healthychildren.org/spanish/Paginas/default.aspx. •
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org