A GPS for Families of People with Special Needs – Part Five



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 V follows; to review Parts I – IV, see the September through December issues of EP magazine.


Medical Appointments: Families need to be organized to make the most out of doctor’s appointments. There are many resources available to address issues such as preparing questions for doctors, coordinating specialists to avoid multiple visits, and efficient use time with providers in the managed care system. One of the most important things for families to know is what their child should be doing at a certain age. Bright Futures has “encounter forms” by age for families at www.brightfutures.org/encounter/family/ Another good resource is Handling Medical Appointments from Family Voices/Family-to-Family New Hampshire at http://nhfv.org/publication/tips-on-handling-medicalappointments/ Family Voices Wisconsin has “Making the Most of Doctor’s Appointments” with tips on what do to before, during, and after the appointment at http://fvofwi.org/wp-content/uploads/2012/01/Right-Doctor-factsheet-new1.pdf Families can find tips on preparing their child in the publication “Prepare Your Child for Doctor Visit” from Parents Reaching Out at http://parentsreachingout.org/cd/pdfs_en/hc003.pdf or Spanish http://parentsreachingout.org/cd/pdfs_es/hc003_es.pdf. Another issue facing families is special needs transportation. Families can find information on what is available and how to address transportation concerns from the NJ Council on Special Transportation at www.njcost.com or their local Center for Independent Living found at www.njsilc.org. By having everything ready ahead of time, families and their family member with special needs will get the best experience during their medical visit.

Medical Decision-Making: Shared decision-making is one of the key concepts in healthcare. When patients partner with their health providers, they get better outcomes. This is one of the key core outcomes of the Maternal & Child Health Bureau, which states, “Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive.” One of the main ideas behind the medical home concept (see section on Medical Home also) is that care needs to be patient and family centered. Children with special needs should have as much input as they can based on age and ability (see also section on Transition.) Parents need to decide if and when their children are capable of making medical decisions. The individual with disabilities should maximize their independence, including medical decisions. One of the most difficult decisions for parents of children with special needs is deciding how much they need to be involved in medical decisions as their child grows older. Besides guardianship (which could also be limited), there are other tools such as power of attorney that parents can use. Alternatives to guardianship resources can be found at:

Alternatives to Guardianship
Guardianship-Family Options (see Power of Attorney)
Guardianship & Alternatives to Guardianship
Guardianship and its Alternatives (see Chapter 3)
Thinking About Guardianship?

There is information on Palliative and End of Life Care: What is an Advance Directive (see Healthcare Proxy) available at www.state.nj.us/health/advancedirective/whatis.shtml from the NJ Department of Health. Lastly, but perhaps most importantly, there is a guide for self-advocates “Self Advocacy Guide to Guardianship” (see Chapter 2) from the Idaho Disability Rights available at www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide%20to%20Guardianships.pdf.

Medical Home: The medical home isn’t a physical place but the concept of having all of a person’s medical care information together and having a primary care provider coordinate all needed care, including primary care and specialty care. This is especially important for individuals with complex needs. The Primary Care Physician (PCP) has comprehensive information on the child’s conditions and helps care run smoothly across different settings and using specialists. The medical home care is family-centered, continuous, comprehensive, coordinated,  compassionate, and culturally competent.

Family-centered care acknowledges that families are the primary caregiver and support for individuals with special needs. Care is continuous when there is the same PCP over time and there is also help with transition to adult care. Comprehensive care covers both sick and well care such as immunizations. Care is coordinated when families are given community-based resources.

Another of the six core outcomes for the MCHB is “Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home.” Compassionate care means that concern for well-being of both the individual and family is demonstrated by providers. Culturally competent care respects the diversity of families served (see also section on Cultural Competence.) There are resources to help families understand and use the medical home concept (see section on Medical Records for care plans).

General information on medical home:
Every Child Deserves a Medical Home
Medical Home
Medical Home – Not Just a Place
or Spanish www.gucchdgeorgetown.net/ucedd/documents/3_spanish.pdf
Medical Home Fact Sheet – Family-to-Family Georgia (Parent-to-Parent of Georgia)
Your Medical Home
http://www.spannj.org/cyshcn/medical_home/MedicalHomeFamilyBrochure.pdf or
Spanish www.spannj.org/cyshcn/core_outcome_2/MedicalHomeFamilyBrochureEspanol.pdf

Family-Centered Care:
Family-Centered Care Self-Assessment Tool

Families Partnering with Providers:
Building a Partnership with Your Child’s Doctor
or Spanish www.gucchdgeorgetown.net/ucedd/documents/4_spanish.pdf
Healthcare Checklist (picking providers, preparing for appointments)

Partnering with Your Child’s Provider
Partnering with Your Doctor

Medical Records: Closely related to the medical home (see also Medical Home section) is the use of medical records to keep track of care. Besides records kept by medical professionals, families can also keep track of the most important information regarding their family member. Individuals with special needs could wear medical ID bracelets and families can carry a sheet in their wallet with essential information such as conditions, doctor contact information, medications/allergies etc. There is also a movement towards electronic medical records, including medical id bracelets that connect to computers. Either way, families can decide what works best for them.

A good starting point would be to look at the Universal Child Health Record at www.state.nj.us/health/forms/ch-14.pdf as well as the Care Plan for Children with Special Health Care Needs at www.state.nj.us/health/forms/ch-15.pdf These forms simplify the child’s basic medical information. The American Academy of Pediatrics also has “Build Your Own Care Notebook” for families at www.medicalhomeinfo.org/for_families/care_notebook/care_notebook.aspx This detailed notebook has information on providers, insurance, appointments, hospitalization, immunizations, medical bills, etc. Other good resources are:

Care Notebook – Exceptional Children’s Assistance Center
or Spanish http://ecac-parentcenter.org/userfiles/F2F/Care_Notebook_Spanish_Final_3-1-11.pdf
Care Notebook – Washington Department of Health
Care Plans for Teens
Teen Care Notebook
My Health Pocket Guide (for self-advocates)

It’s also important for families to be aware of their rights – and their children’s rights – to privacy and confidentiality regarding their medical records under HIPAA.


Mental Health is just as important as physical health. In recognition of this fact, the Affordable Care Act  strengthened access to mental health services. One of the ten Essential Health Benefits under the ACA is coverage for “mental health and substance use disorder services, including behavioral health treatment.” Increased access to behavioral health treatment may also make it easier to get coverage for autism. Although NJ has an “autism and other developmental disabilities” mandate, it only applied to 25% of plans which were subject to state regulations. Federal mental health parity means that mental health treatment must be equal to that for physical health. However, NJ already had mental health parity that was even stronger than the federal law.

In dealing with mental health, families must try to avoid the stigma associated with mental illness. The National Alliance on Mental Illness (NAMI) likens it to any other biologically-based illness except the organ affected just happens to be the brain, and the symptoms manifest as behavior. Just as no one would blame someone with diabetes who needed insulin, the same should be true for those who need treatment for mental illness. Although the recent displays of school violence have opened the dialogue on mental illness, research indicates that people with mental health issues are more like to be victims, rather than perpetrators, of violence. NAMI also has workshops and classes for families dealing with mental illness at www.naminj.org/programs/children-info-services/nami-basics/ or Spanish contact Martha Silva at (888) 803-3413 or naminjenespanol@msn.com. Nationally NAMI has additional resources from their Child & Adolescent Action Center at www.nami.org/Template.cfm?Section=For_Parents,_Caregivers,_and_Youth&Template=/ContentManagement/ContentDisplay.cfm&ContentID=37809 or Spanish www.nami.org/Template.cfm?Section=Child_and_Adolescent_Action_Center&template=/ContentManagement/ContentDisplay.cfm&ContentID=21090 They also have a family guide on how the primary care provider (e.g. pediatrician) can address mental health at www.nami.org/Content/ContentGroups/CAAC/FG-Integrating.pdf. In NJ, there are also Family Support Organizations in each county have information and support for parents at at http://njfamilyalliance.org or for Spanish just click on translate. There is also the Children’s System of Care and an overview of services, including emergency mobile response, which will go to where the child is located for crisis stabilization is available at www.nj.gov/dcf/about/divisions/dcsc/ Performcare, the Contracted System Administrator (gatekeeper) of the Children’s System of Care, has a “Youth & Family Guide” at www.performcarenj.org/pdf/provider/youth-family-guide-eng.pdf or Spanish www.performcarenj.org/pdf/provider/youth-family-guide-span.pdf.

Other good resources for families on what to look for and when to seek help:
Young Children:
Center on the Social and Emotional Foundations for Early Learning – Family Tools
First Steps: A guide for Parents of Young Children with Developmental Disabilities Chapters 1-4 (diagnosis based on age, parent feelings, definition of developmental disabilities, individual/family adjustment)
www.fddc.org/sites/default/files/file/publications/first_steps/FSSTEPSEngColor01-05.pdf or Spanish www.fddc.org/sites/default/files/file/publications/first_steps/FSSTEPSSpaColor01-05.pdf
All Ages:
A Family Guide to Children’s Mental Health Services and Supports – Florida Department of Children and Families
Bright Futures in Practice (what to expect by age)
Emotional, Behavioral, and Mental Health Challenges in Children and Adolescents – Maternal/Child Health Knowledge Path – U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal/Child Health Bureau
Family Guide to Systems of Care for Children with Mental Health Needs – English & Spanish

Families of individuals with disabilities need to recognize when their family member, or even other family members, need some support to address mental health and wellness.


Wellness and preventive care are especially important for people with special health care needs. So often, the focus is on the person’s condition that typical measures such as lead screening, immunizations, etc. could be forgotten. The Affordable Care Act has a prevention and wellness initiative which means that these services are provided to families at no cost.

Nutrition: According to the Centers for Disease Control (CDC), 18% of children and 21% of teens are obese (not just overweight.) Obesity causes children to develop “adult” diseases like diabetes, high blood pressure, high cholesterol etc. The two most important factors in reducing obesity are nutrition and activity (see also section on Physical Activity.) The CDC has good information on nutrition for children at www.cdc.gov/bam/nutrition/index.html or similar information in Spanish at www.cdc.gov/spanish/especialesCDC/ObesidadNinos/Wellness guidelines from Bright Futures have been endorsed by the American Academy of Pediatrics (AAP). The nutrition guide is broken down by age and explains ideas such as portion control. It also addresses related topics such as breastfeeding and food allergies.

The guide is available at www.brightfutures.org/nutrition/index.html The AAP also has nutrition information for families available at www.healthychildren.org/english/healthy-living/nutrition/Pages/default.aspx or Spanish www.healthychildren.org/spanish/healthy-living/nutrition/paginas/default.aspx. This website has information on healthy snacks, food substitutions, picky eaters, gluten free diets, etc. The AAP NJ Chapter has “Obesity Prevention Resources for Parents” at www.aapnj.org/showcontent.aspx?MenuID=998 in English and Spanish. This website also has tips by age, particularly for young children. Children who are overweight or obese are more likely to grow up to be obese or overweight adults, so prevention is essential.

Physical Activity: Closely related to nutrition (see Nutrition section) and obesity prevention is physical activity. Physical activity is essential for good health for all people with disabilities, regardless of ability. It is even more important for children with special needs to start early as they may be more likely to have weight problems, and there are ways to make activities accessible to them. There are resources on wellness and prevention from Bright Futures, endorsed by the American Academy of Pediatrics (AAP). Bright Futures has “Bright Futures in Practice: Physical Activity” available at www.brightfutures.org/physicalactivity/about.htm They have activities for children with and without special healthcare needs and address topics such as asthma and preventing heat stroke/exhaustion, etc. The AAP also has a fitness guide at www.healthychildren.org/english/healthy-living/fitness/Pages/default.aspx
or Spanish Spanish www.healthychildren.org/spanish/healthy-living/fitness/paginas/default.aspx. This guide has ideas on making time for fitness, involving the whole family, developing a fitness plan, and overcoming obstacles such as living in unsafe neighborhoods.

The U.S. Department of Health and Human Services has a special guide on physical activities for girls at www.girlshealth.gov/fitness/index.html and www.girlshealth.gov/padres/forma_fisica/index.html (Spanish) The Centers for Disease Control & Prevention has a program “Body & Mind: Physical Activity” at www.cdc.gov/bam/activity/index.html and www.cdc.gov/spanish/hojas/actividad_fisica.html (Spanish) designed for children to use for motivation. There is also a free online course on nutrition and fitness, which is personalized to the individual called “14 Weeks to a Healthier You” from the National Center on Health, Physical Activity, and Disability at www.ncpad.org/14weeks/ The National Center on Health, Physical Activity, and Disability developed a guide “Discover Accessible Fitness” for wheelchair users that can be found at www.nchpad.org/discoverfitness/index.html In addition to the resources above that include special needs, there are groups that work just with children with disabilities. There is a listing of accessible playgrounds at www.accessibleplayground.net/united-states/new-jersey/. Other organizations have peer buddies that mentor children and adults with special needs such as:
Little League Challenger Division
Miracle League
Special Olympics NJ

Sexuality: Families need to remember that individuals with disabilities have the same sexuality feelings as everyone else. Some children may need help in understanding what is happening to their bodies as they grow up. The Vanderbilt Kennedy Center has guides for both boys and girls. One is “Healthy Bodies: A Parent’s Guide on Puberty for Boys with Disabilities” and the other is “Healthy Bodies: A Parent’s Guide on Puberty for Girls with Disabilities.” The University of Minnesota has a factsheet for families “Promotion of Healthy Relationships and Sexuality for Individuals with Disabilities” at http://lend.umn.edu/docs/LEND-FACT-sexuality.pdf. The University of South Florida’s “Sexuality and Developmental Disabilities Across the Lifespan” is at http://flfcic.fmhi.usf.edu/docs/Parent_LowRes_English.pdf or Spanish http://flfcic.fmhi.usf.edu/docs/Parent_LowRes_Spanish.pdf Dr. Peter Gerhardt, chair of the Organization for Autism Research (OAR) has good information on adult issues, including sexuality, at www.researchautism.org/

There are also resources with a special focus on women’s health, such as “Being a Healthy Woman” at www.health.nsw.gov.au/pubs/2010/being_healthy_woman.html. Another excellent resource is “Let’s Talk About Health” from The Arc of NJ’s Mainstreaming Medical Care Project. There is a workbook and video explaining exams available at http://mainstreamingmedicalcare.org/ and click on “Women’s Health Project” order form.


Families need to make sure that their children do not get illnesses that could be prevented by vaccines. Some parents may think that because they themselves had some of these diseases as children, that it won’t hurt their children to experience the same diseases. However, even chicken pox can have serious consequences, including hospitalization and death. The American Academy of Pediatrics has a list of recommended immunizations at www.aap.org/immunization/izschedule.html. The AAP also has a family page, including making educated decisions on vaccines and safety, at www.aap.org/immunization/families/families.html.

A Special Note about Flu Prevention: Families of individuals with disabilities need to know that some people are at higher risk of flu complications. The Centers for Disease Control & Prevention has “People at High Risk of Developing Flu–Related Complications:” available at www.cdc.gov/flu/about/disease/high_risk.htm or Spanish http://espanol.cdc.gov/enes/flu/about/disease/high_risk.htm. In addition, The Arc national has information on “Steps You Can Take to Prevent the Flu” www.thearc.org/document.doc?id=4470.

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

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