Magazine article The Exceptional Parent

A GPS for Families of People with Special Needs

Magazine article The Exceptional Parent

A GPS for Families of People with Special Needs

Article excerpt

INTRODUCTION

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 VII follows; to review Parts I--VI, see the September through March issues of EP magazine.

QUALITY ASSURANCE IN HEALTH CARE

An important component of health care for individuals with special needs is access to quality care. Family Voices/ Family-toFamily New Hampshire has a booklet "Best Practices for Children and Youth with Special Health Care Needs" at http://nhfv.s481 .sureserver.com/wp-content/uploads/2013/07/best_practices.pdf This guide has information on family-centered care, community based resources, medical home, and other important pieces of medical care that is of high quality. New England SERVE has an extensive report "Enhancing Quality: Standards and Indicators of Quality Care for Children with Special Health Care Needs." This publication has information in addition to family-centered care such as health provider characteristics and is found at www.neserve.org/neserve/pdf/NES%20Publications/Enhancing_Quality.pdf The National Association for Healthcare Quality, www.nahq, has information about healthcare quality, as does the Agency for Healthcare Quality at www.ahrq.gov Families need to make sure that their family member with special needs have high quality care for best outcomes.

SUPPORT: INDIVIDUALS/FAMILIES

Lastly, but perhaps most importantly, is family support for families of individuals with special needs. There are many different kinds of resources available to families. NJ is fortunate to now have a Department of Children and Families. For information on developmental disabilities and/or mental health for children, see www.state.nj.us/dcf/families/csc Please note that children should be transitioned to adult services as needed. For individuals with developmental disabilities, the Division of Developmental Disabilities is launching the new Supports Program and information can be found at www.state.nj.us/humanservices/ddd/programs/supportsprgm.html

There are disability resources that explain what is available to families throughout the individual's lifespan. The Division of Disability Services publishes an excellent guide" NJ Resources" annually and it's found at www.state.nj.us/humanservices/dds/documents/RD%2014_webqxd.pdf or Spanish (2013) www.nj.gov/humanservices/dds/documents/RD13SpanishES.PDF They also provide free help to families at their hotline at (888)285-3036. The Family Support Center (FSC) publishes a similar guide that goes into even more detail on explanations of programs. The FSC "Options Manual" is available at http://njcaregivers.org/wp-content/uploads/2013/08/Dptions2010.pdf or Spanish www.fscnj.org/wp-content/uploads/sites/4/2013/10/0ptions_Manual_Spanish.pdf The FSC also has a searchable database so families can look for resources like transportation etc. at www4.irissoft.com/IFTWSQL4prod/show/home_show.aspx. They also have a hotline at (800) FSC-NJ10.

Families of individuals with disabilities need to recognize that they have an extra role as caregiver. The Caregiver Action Network has a Family Caregiver Toolbox found at http://caregiveraction.org/resources/toolbox/ Here families can find information on communicating with health professionals, how technology assists with caregiving, financial planning etc.

Sometimes parents just need to talk to another parent who has experienced similar issues. NJ Parent-to-Parent matches trained volunteer parents to families of children with the same condition at www.spanadvocacy.org/content/nj-statewide-parent-parent (for Spanish click on "translate"). Friends Health Connection also matches people with the same condition, or their caregivers at http://friendshealthconnection. …

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