BY LAUREN AGORATUS
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 EPmagazine.
QUALITY ASSURANCE IN HEALTH CARE
An important component of health care for individuals with special needs is access to quality care. Family Voices/Family-to-Family 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.gov, 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/Options2010.pdf or Spanish www.fscnj.org/wp-content/uploads/sites/4/2013/10/Options_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.org They also have free webinars with experts and have an online community. Some families prefer going to support groups to talk to other families. The NJ Self Help Clearinghouse has information statewide at www.njgroups.org or Spanish www.mededfund.org/NJgroups/Cultural-Language.pdf.
Families need to remember that they are the best advocates for their family member because they have a personal stake in the outcome and can teach them to self-advocate. In addition, because parents are with their child with special needs 24-7, they need to realize that they are the experts in their child’s strengths, needs, and development!
SAMPLE LETTERS AND FORMS
Sample letters appealing denials of services
www.healthlawadvocates.org/tools/documents/files/HLA-Guide-to-Appeals-2-15-13.pdf
pages 19-20
Sample logs for communication with healthcare providers; Exceptional Children’s Assistance Center – Care notebook
http://ecac-parentcenter.org/userfiles/F2F/Care%20Notebook%20FINAL%20ss%2012.1.09.pdf
page 10
Sample healthcare transition forms for families: Transition Checklist for Caregivers – AAP Illinois 2 pages
www.spanadvocacy.org/sites/g/files/g524681/f/files/CaregiverChecklist_RE_0.pdf
For Youth and Self-advocates; Got Transition?
www.gottransition.org/UploadedFiles/Files/NHCTC_ReadinessYouthTool_06_Oct_2011.pdf
Sample consent to release information forms Medical release form; American Academy of Family Physicians
www.aafp.org/fpm/2003/0200/p29.html
For Youth and Self-advocates; Got Transition?
www.gottransition.org/UploadedFiles/Files/NHCTC_ReadinessYouthTool_06_Oct_2011.pdf
School release form: American Academy of Pediatrics – Clinical Topics-Confidentiality HIPAA/FERPA Information Release Form 1
https://schoolhealthteams.aap.org/public/content.cfm?m=13&id=13&startRow=1&mm=0&parentMenuID=0
Sample healthcare power of attorney forms; American Academy of Family Practitioners – Advance Directive
www.aafp.org/afp/1999/0201/p617.html
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
WHAT DO THE TERMS MEAN?
Accessibility: Removing barriers so people can get a service, participate in the community, etc.
Alternative Medicine: Care outside of traditional medical care.
Advocacy: Speaking on behalf of yourself or someone else so they get what they need.
Advance Directive: A person’s wishes for medical care, usually at the end of life.
Affordable Care Act (ACA): Improving health care, covering more people, providing patient protections, and helping with cost.
Appeal: Asking the insurance company to take a new look at a claim they turned down.
Care Coordination: All providers work together on a person’s health care needs.
Care Manager: Helps the person put together their health care services.
Caregiver: Someone who cares for another who can’t do everything him or herself.
Comprehensive Care: Supports the patient’s needs through their lifetime.
Coordination of Benefits: Figuring out who pays what when there is more than one insurance.
Cultural Competency: Understanding and respecting that people from other cultures may have different beliefs toward health care, disability, etc.
Diagnosis: The name of the condition.
Disabled Adult Child (DAC): Someone who is disabled before age 22 and has a parent that is disabled, retired, or passed on.
Dual Eligible (in terms of health insurance coverage): A person who can be on both Medicaid and Medicare.
Early Intervention: Services for children with special needs from birth to age 3, some of which are at no cost to families.
Early Periodic Screening Diagnostic and Treatment (EPSDT): Medicaid services for children to ensure children get what they need.
Emergency Preparedness: Being ready in case of natural disaster.
Essential Health Benefits (EHB): 10 services under the ACA that must be covered by health plans.
Family-Centered: Families and professionals are partners in care. The knowledge and wishes of families are respected by professionals.
Family-to-Family Health Information Center/Family Voices: Help families of children with special needs find services.
Family Support: Services to help parents of children with special needs.
Genetics: How parents may pass on conditions to their child.
Guardianship: Taking charge of someone’s life when they are an adult.
Health Insurance Portability and Accountability Act (HIPAA): Keeps the person’s health information private.
Health Information Technology: How details on a person’s condition is stored (usually on a computer.)
Health Maintenance Organization (HMO): A type of plan under managed care.
Managed Care: Patients can only visit certain providers in the “network” and their doctor needs to give the ok to see other doctors.
Medicaid: Public insurance that covers people with low income or disabilities
Medical Home: An idea where the team of doctors work together for best care.
Medicare: Public insurance that covers people over 65 or with certain disabilities.
Network: Doctors, drugstores, and hospitals covered by an insurance plan.
People First Language: Recognizing that people with disabilities are people first and not their disability.
Power of Attorney: Another person’s authority to decide on care for an adult.
Preventive care: Wellness care to prevent disease.
Primary Care Provider (PCP): The main doctor the person uses.
Quality Assurance: Making sure care is of good value.
Referral: The Primary Care Provider gives the ok to see another doctor or service.
Regional Early Intervention Collaboratives: Help families of children from birth to age 3 with early intervention in New Jersey.
Screening: Tests to decide if the child is at risk; screening is not a diagnosis.
Self Advocacy: Speaking up for yourself and having control.
Shared Decision-Making: The family and doctor decide together on choices for care.
State Children’s Health Insurance Program (SCHIP): Medicaid plan for children.
Stigma: Negative, untrue, and unfair beliefs about a condition, a disability, etc.
Supplemental Security Income: Money for children with disabilities based on family income (family income no longer counts as the person’s income at age 18.)
Title V: Programs for mothers and children with special needs.
Transition (health): Changing from child to adult health care.
Vaccine preventable disease: Shots to avoid illness.
