partnering together - your family's healthcare

7/28/2019 Partnering Together - Your Family's Healthcare

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MOF2F

MEET OUR PARTNERS:

HEALTHCAREDay ater day, we are ooded by inormation aboutour health rom medical providers, insurancecompanies, the media, riends, and amily.Being responsible or our health means we takeinormation in and use it to make good decisionsabout medical care. It is important that you areeducated about and take care o your own health,especially i you are responsible or supporting thehealth o another person.

A childs health care needs begins beore he or she isborn and they continue to be central to quality olie across the liespan. Beore giving birth, mothersmust make sure they stay healthy and receive goodprenatal care. When a child is born, ederal andstate laws mandate that he or she is screened orhealth conditions. As children grow, they should

see the doctor regularly or well child examinatTis is a time or parents to ask questions and labout their childs development as they grow upFor inormation about well child checks, see pa

Part o growing up is taking over responsibilityour own health matters. Medical transition hap

when your child moves rom pediatric to adultcare. o read tips on easing the transition to admedical care, lip to page 6.

Having the right tools to take care o your ownand others healthcare is essential to navigating health care world. MOF2F has many tools avaiin print and online to help you take charge o yhealth. Visit us online or call us today. We are to help.

VOL. 2, ISSUE 5 MOFAMILYTOFAMILY.ORG

M i s s o u r i F a M i l y t o F a M i l y

YOUR FAMILYS

PAGE 6HEALH MAERSDo you know you should beasking about your amilys health?

PAGE 3WELL CHILD EXAMSEnsuring the health o children asthey grow!

PAGE 7ACA URNS HREE!Whats happened so ar and whatis going to change?


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Many new things are happening with Missouri Family toFamily! We recently released our newest version o the F2FNetwork older. Last year, over 40,000 olders were handedout across the state to individuals with disabilities andspecial healthcare needs and their amilies by our partnersand at special events.

So ar this year, we have trained 33 new SOS mentors, whowill be serving as a lieline to other individuals and amilies.Although we have many new mentors, we still need more!

I you are interested in serving as a lieline or anotherparent or amily member, contact us today!

he F2F network is a statewide collaboration o organizationsthat oer supports to individuals with disabilities and theiramilies. Our network o organizations that support amilies inMissouri continues to grow. his time last year, we had sevenailiates; today, we have 95.

One thing that we are very excited about is the new LieCourse ramework we have been developing. We hope the

lie course approach helps amilies realize that even whetheir child is very young and as he/she ages and grows iadulthood, their experiences and environment can shaphow they will live their lie in the uture.

he cornerstone o this ramework is a publication werecently published called Charting the Life Course: A Gufor Individuals, Families and Professionals. Tis guidewas developed by MOF2F and our stakeholders to helpindividuals with disabilities or special healthcare needs

amilies at any age or stage o lie think about what theyneed to know, identiy how to nd or develop supportsdiscover what it takes to live the lives they want to live.

Charting the Lie Course is a tool to assist you in creativision or the uture. It is designed to help you think abthe questions to ask as well as the choices and options tconsider as you plot a course to a ull and meaningullie. It is intended to be a starting point no matter wheryou are in your lie journey. You can see sample questioon page 6 or download it at moamilytoamily.orgn

MOF2FM I S S O U R I F A M I L Y T O F A M I L


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MOF2F

Did you know that Missouri lawmandates that all newborns are

screened or certain medicalconditions? Te screeningincludes a simple blood test,

involving a ew drops o bloodrom a babys heel, and hearing check, buthey are a huge step in detecting specialealthcare needs in newborn babies. Many ohe disorders babies are screened or are veryare, but they are also very serious and canesult in serious medical issues i not identiednd addressed early. Newborn screenings helpdentiy i babies need treatment, such as apecial diet or medication. Early identications important or addressing special healthcare

eeds and improving the quality o lie orhildren across the liespan.

Tese tests are completed beore your child leaves

the hospital, usually 24-48 hours ater birth.I your baby is born at home, you will need to

make an appointment with your babys doctorto have the screening test. Tese screenings willtell you and your doctor i your child is at riskor a condition. Sometimes, more than onenewborn screening is needed. I an additionalscreening is needed you will be notied either byyour babys doctor, the hospital, or staf rom theDepartment o Health & Senior Services.

Ater the newborn screening, it is importantthat you take your child to the doctor or well-baby and well-child checks. Well-child checksare covered under the Afordable Care Act aspreventative healthcare, so your child has access

to these visits regardless o whether you haveinsurance or not. Well checks include a physicalexam as well as immunizations and screeningsor vision, hearing, and teeth.

AC EARLY: C h e c k i n g m o r e t h a i n g e r s a n d t o e sTese visits give you a chance to ask questionand talk about any concerns you have about

childs development, behavior, and well beingYour doctor will also give education and guidabout your childs health and development.

Your childs well check-ups are importantto his or her health and well-being. It isimportant that your child sees his or herdoctor or regular well check-ups. You knyour child best. I you are concerned abouyour childs health and development, talk your childs doctor or nurse.

I you have recently received a diagnosis a newborn or regular screening and need

help guring out what your amilys nextsteps are, contact MOF2F. We can provthe inormation you need and connect yo

with another amily who has been there.

Used with permission. From Track Your Childs Developmental Milestones, MO First Steps and Parents as Teachers.


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F A M I L Y P A R T N E R S H I Po l l - r e e : 1 - 8 0 0 - 7 7 9 - 8 6 5 2 | O n t h e w e b : m o a m i l y p a r t n e r s h i p . o r g

Te Family Partnership is an initiative between:

which is funded by the Maternal and Child Health Bureau Title V Block Grant

southwest region

PROMOING AWARENESS ABOU FEALALCOHOL SYNDROMENo parent is ever given a guarantee they will haveperect, healthy children. It makes no dierence

what race, religion, rom urban or rural settings, what socialbackground we have, we all take the same chance when we have ouchildren. It is important to avoid activities that could be harmul toa developing baby when pregnant.

Fetal Alcohol Syndrome (FAS) is a condition that is caused when a babyexposed to alcohol during pregnancy. Very early stages o development aespecially vulnerable, oten even beore a woman realizes she is pregnantEven a small amount o alcohol at crucial moments o development canimpact a childs health across the liespan. FAS oten goes undiagnosedbecause the symptoms are more behavioral or emotional and hard tosee. When a amily receives this diagnosis, it may be diicult to accept

It is important to remember that all children are unique and havedierent ways o learning and interacting with others. For children

with FAS, language development is oten aected. Children with FAmay have diiculty learning rom their mistakes or be impulsive. It iimportant to determine a childs strengths so they can be encouragedabout what they can do well. One-on-one attention and patience,

patience (did I say patience?) as well as understanding the childsneeds will accomplish much. he importance o a calm and stableenvironment with consistent rules cannot be over stated. aking awaas much stress as possible can give your child the room needed tolearn. Accommodations may include not timing tests, allowing themto stand when they read or do school work, chewing gum to let them

work o anxious energy or ocus, and providing requent breaks.Any coping modiication that helps them ocus and learn is worthadvocating or and including in their Individual Education Plan andcommunicating with their circle o support.

Our oster care system has a great number o children in theircare who have FAS and are in desperate need o understandingand loving amilies to help them navigate through this rustrating

disorder. It is very important to me to spread awareness about FASas our amily has adopted a child with the condition. My hopeis you will use this knowledge to equip women in your circle oinluence to prevent FAS rom aecting their childrens lives andhelp obliterate this preventable condition in the uture.

northwest region

FINDING HE RIGH PEDIARICIAN

Recently, someone told me You are the CEO oyour childs lie! his spoke to me on many levels,speciically regarding my childs healthcare needs.As I put on my CEO hat, I am empowered to make great selections andmanage our healthcare providers. I am reminded that I am not only theparent, but part o the team that makes decisions regarding his care. Itis important to determine, what is my approach to my childs health?What characteristics in a pediatrician are important to me? For example,does he/she take a more proactive approach to treatment, or a morerelaxed wait and see approach? Schedule a time to meet! A great CEOalways conducts a detailed interview! Since the time with a doctor istypically limited, I encourage amilies to ask or an extended visit or airst appointment.

Regardless o a childs needs, healthcare o children is oten driven byone provider, the primary care physician or pediatrician. Beore youstart looking or your primary care physician, consider asking aroundreerrals are oten a starting point. hen, decide what is important oryour amily. Are you only going to be visiting a couple times a yearor sniles and immunizations or are your childs needs more complexand require requent contact? Always come prepared with your topive questions to make the process quick and eicient. An organizedbinder with recent tests/labs/concerns can help explain your childs pastand current needs. Feel ree to ask speciic questions regarding yourchilds condition. Such as, are you amiliar with the needs o a child thatrequires G-tube eedings? During the interview, pay attention to thedoctors manner. Do you have his/her undivided attention? Do you eelat ease asking questions? Also, pay attention to other aspects o the oice.Was parking available and accessible? Was the sta riendly and helpul?

When our amilys insurance changed we were orced to pick anew pediatrician. Luckily, our old physician recommended onethat would be a good it or our needs. We needed a practice thatwas amiliar with children with complex needs, would be willingto embrace our complicated case and answer our questions withpatience and understanding. We have ound our medical home.

he right it or our amily means less stress navigating medicalsystems and a central place to get answers. I encourage every amily,regardless o health need, to ind a practice that embraces the valuesthat your amily inds important and listens to your concerns,because you are your childs CEO!

PARTNERSHIPa c o l l a b o r a t i o n b e t w e e nMISSOURI FAMILY TO FAMILY | SPECIAL HEALTH CARE NEEDS

FAMILY


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northeast region

DOING YOUR HOMEWORK

Healthcare is a very important topic in the lives oamilies, especially those who have children withdiverse medical needs. Your childs health maybring daily challenges where no two days are thesame, but we all share many o the same responsibilities, like indingthe right doctors. As your childs advocate, you know your childbetter than anyone else ever will and you are the one that makes theimportant decisions, so it is important to do your homework!

One o the greatest things about having internet is the ability tocheck out doctors, hospitals, and clinics. his can be a huge resource,especially i you are new to an area or need to transition rom pediatricto adult care doctors. Now you have the ability to ind the providersyou need and interview them prior to even getting your child in ora visit. It is very important that you not only are comortable with thedoctor, but that you are conident that your child will receive the bestadvice, treatment, etc. that can be oered. Many doctors vary in theirskills, backgrounds, education and specialties.

Check out the providers in your area, and then call, email, askquestions or even set up an appointment to meet with them beorscheduling to take your child in to make sure that its a good itor everyone involved! It can be a great experience and make thetransition to a new provider much smoother or everyone.

southeast region

CARING FOR A CHILD WIH EPILEPSY

Being a parent o a child with epilepsy has manychallenges. Being aware o what to look or anddo during a seizure is vital to the health o yourchild. Seizures can be scaryeach time my childhas one I eel the rush o adrenaline!

During a seizure, a child may lose consciousness, have diicultybreathing or appear to stop breathing, or twitch or convulse. Withmilder seizures a child may be momentarily conused or unaware ohis or her surroundings. Some seizures can only be detected by careulobservation, because a child may blink or stare into space or a momentand then resume normal activities. Do your best to note the requency,duration and symptoms o seizures so you can report this to your doctor.

Ater a seizure watch your child or signs o conusion, this is commonand your child may be tired, disoriented, conused, or agitated orminutes to hours ater the seizure. I your child wants to sleep allow it.Do not give extra medication without a prescription. Your child maybe rightened or conused during and ater a seizure, so be sure to oerplenty o comort and reassure your child that everything is OK.

Parents caring or a child with epilepsy may beneit rom seekingadvice rom proessionals like psychologists, social workers, orspecialized educators as well as other parents. For those whose kidshave more severe epilepsy, this help is critical. alking to otherscan help parents plan or the uture by learning about options andidentiying resources that will improve the childs well-being.

northwest region northeast region

southwest region

southeast region

SACEY ANDERSON(816) 835-5005

[email protected]

BEH DOODY(660) 200-5371

[email protected]

PAM DAHLGREN(573) 776-1896

[email protected]

BEV HOLMES(573) 473-8873

[email protected]

ATCHISON

HOLTHOLT

NODAWAY

ANDREW

BUCHANAN

WORTH

GENTRY

DEKALB

CLINTON

HARRISON

DAVIESS

CALDWELL

PLATTE

CLAY

RAY

JACKSON

CASS

CARROLL

CHARITON

LAFAYETTE

JOHNSON

SALINE

PETTIS

BATES

VERNON

BARTON

JASPER

NEWTON

MCDONALD

HENRY

ST. CLAIR

CEDAR

DADE

LAWRENCE

BARRY

BENTON

HICKORY

POLK

GREENE

CHRISTIAN

STONETANEY

WEBSTER WRIGHTTEXAS

DOUGLAS

OZARK

MERCER

GRUNDY

LIVING

STON

PUTNAM

SULLIVAN

LINN

SCHU

YLER

ADAIR

MACON

SCOTLANDCLARK

KNOXLEWIS

SHELBY MARION

RAND

OLPH

MONROERALLS

HOWARD

AUDRAIN

PIKE

COOPER

BOONE

CALLAWAY

TNOM

YREMOG

LINCOLN

WARREN

MORGAN

MONITEAU

COLE

OSAGE

GASCONADE

MILLER

CAMDEN

DALLASLACLEDE

PULASKI

MARIES

PHELPS

FRANKLIN

ST. CHARLES

ST.

LOUIS

JEFFERSON

ST. LOUIS

CITY

CRAWFORD

DENT

WASHINGTON

ST.

FRANCOIS

STE.

GENEVIEVE

PERRY

SHANNON

HOWELL

OREGON

CARTER

RIPLEY

BUTLER

REYNOLDS

IRON

MADISON

WAYNE

BOLLINGER

CAPE

GIRARDEAU

SCOTT

MISSISSIPPISTODDARD

NEW

MADRID

DUNKLIN

PEMISCOT


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Part o taking charge o your health means knowing what questions to ask. Te questions below are to help you think through important health-related mat

ke managing and accessing healthcare and staying well. Your Family Partner and MOF2F are also there or you to answer any health-related questions!

Who else understands my medical needs and inormation? Do I qualiy or Medicaid or Medicare coverage? Can I get my own health insurance coverage? Am I being supported to help with managing my own medications, talking to my doctors

and other medical proessionals, and participating in making medical and health decisions? Do I get regular physicals and routine exams, such as mammograms, prostate checks, and

blood pressure monitoring? Am I being supported to eat healthy and be physically active? Is my reproductive health being looked ater? Do I practice sae sex and/or should I use birth control? Do I understand the health risks o behaviors such as smoking, excessive alcohol use, or

illegal drug use?

Adult Life(22-55)

Who else understands my medical needs and is available i I need help communicati

those needs to others? Are my supporters aware o how some medications can aect an older person diere Am I eating healthy meals and snacks? Am I staying as physically active as possible? Who will help me create a will and make my wishes known or medical directives?

Aging(55+)

You can nd more questions in Charting the Life Course: A Guide for Individuals,Families, and Professionals. This guide helps amilies explore questions they mighhave while supporting a loved one with special healthcare needs to have quality o liacross the liespan. View or download the guide today at mofamilytofamily.o

What do you need to tell the school nurse about my needs? What i I need to take medications or treatments at school? Do local emergency providers know our wishes i something happens to me at school? Are you keeping me up to date with regular childhood checkups and immunizations?

Are you taking me to see specialists or speciic issues? Are you teaching me to greet and interact with doctors and other medical proessionals? Do I know how to ask or help or tell when I am sick or just dont eel well? Are you helping me understand my disability or healthcare needs and how they aect

me as I grow and change? Do I know what is good (ood, sleep, exercise) and bad (drugs, smoking) or my body? How are you helping me prepare or and understand puberty?

School Age(5-15)

When should you help me start looking or practitioners who ocus on adults? What health related tasks can I start to help with or do or mysel? Are you helping me to know the symptoms, triggers, and side eects o my disability

healthcare need and how to get help or interventions?

Are you helping me learn how to talk about my disability or healthcare needs with others? Can some o my therapies be replaced with regular physical activities? Are you helping me prepare or and understand puberty? Do I eel comortable asking you or trusted adults about the changes in my body as I

become an adult? Have you talked to me about birth control/reproductive health?

Transition (15-21)

ASKING QUESTIONS ABOUT YOUR HEALTHa c r o s s t h e l i e s p a n

Are you keeping me healthy with well-baby visits and taking me to the doctor whenI am sick?

Do your parental instincts tell you something isnt going quite right with my health,growth or development?

Do you know i I am hitting my developmental milestones on time? Do you know what red fags to watch or? Are you expressing your concerns about my health or development to my pediatrician? Where are you taking me to nd out about my health or development; what kind o

testing do I need? Has anyone else mentioned concerns about my health or development to you?

Prenatal and Infants (0-3)

Are you nding or accessing medical and health personnel experienced in caring children with my diagnosis?

Are you taking me to a pediatrician who understands and meets my needs? Does our pediatrician reer me to specialists when needed? Do you eel like you have to go along with everything the proessionals tell you ab

me, even i your gut tells you otherwise? Do you know what to do i we dont like or i you disagree with my medical proessio Will therapies help me to grow and develop? Am I part o a medical home? Have you invited local emergency personnel to our home to meet me and learn ab

my needs in case o an emergency? Are you teaching me about healthy, nutritious ood and how my body works?

Early Childhood (3-5)

= A practice that promotes sel-determination


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Friend us on Facebook and ollow us on witter or news, contests,events and updates o interest!

Want a printed version o our resources? Need inormation in anaccessible ormat or in Spanish? Call us at 800-444-0821 and we wconnect you to the inormation you need!

Te Afordable Care Act (ACA) turned three in March! Tanks to theACA, many Americans are gaining access to health care that was nevereore aforded to them.

What changes have already taken place?Preventative care is free for you and your family. (2010)Insurance companies are not able to cancel the policies ofpeople who get sick. I you or a loved one develop a serious illness,insurance companies can no longer say they cant insure you. (2011)Young adults can stay on their familys insurance until age 26,unless they get coverage through their employers. (2010)Adults with high prescription drug costs on Medicare Part Dare paying less for their medications. People whose expenses arehigh enough to put them into the non-reimbursed donut holeare receiving discounts and rebates to deect their own out-o-pocket expenses. (Efective in 2010 and lasting until 2020, whenthe donut hole will close entirely)You now have the right to choose any available participatingprimary care provider for yourself or your family. (2010)Children with special healthcare needs or developmentaldisabilities (also called preexisting conditions) cannot bedenied coverage. (2010)

What changes are coming?

Later this yearOn October 1, 2013, open enrollment in the new Marketplacesstarts. Diferent nancial assistance programs will be directly linkedinto the Health Insurance Marketplace when enrollment starts. In

the meantime, you or your child or teen may qualiy NOW orno-cost or low-cost health insurance through Medicaid and theChildrens Health Insurance Program (CHIP). Missouri has chosento have an exchange developed by the Federal government.I you need assistance guring out the exchanges and choosing a plan,there will be trained navigators available to assist you at no cost.

n 2014Beginning in 2014, neither children nor adults will be denied or aspecial healthcare need/disability.When key parts o the health care law take efect in 2014, more peoplethan ever beore will qualiy or health insurance that ts their budget.

You may be eligible or a ree or low-cost plan, or a new kind o taxcredit that lowers your monthly premiums right away.

Te Essential Health Benets (EHB) package must be coveredby health plans selling insurance through the Exchange and allMedicaid state plans. Te EHB plan must cover services thatamilies with children who have special health care needs accessoten, including: emergency services, hospitalization, mental healthservices, including behavioral health treatment; prescription drugs;rehabilitative and habilitative services and devices and many others.

You can sign up or e-mail updates, prepare or the changes, and ndwhat coverage ts your amilys needs at healthcare.gov. Count onMOF2F to keep you up to date about health care changes. n

Affordable Care Acturns Tree! RESOURCES

Healthcare.gov

At the Healthcare.gov portal, you canexplore insurancecoverage and options,get help decodingand understandinginsurance inormation,nd out details aboutthe Afordable Care

Act and how theActs changes to thehealthcare and insurance industries afect your amily, and learn abouhow the ACA can help you stay healthy through preventative care.

Charting the LifeCourse: A Guide forIndividuals, Familiesand Professionals

Do you know whatyou need to know?Do you know whatquestions to ask?

Charting the Life Coursewas developed tohelp individuals with

disabilities or special health care needs and amilies at any age orstage o lie think about what they need to know, identiy how tond or develop supports, and discover what ittakes to live the lives they want to live.

View and download Charting the Life Courseand many otherresources at moamilytoamily.org.


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8Missouri Family to Family

UMKC-Institute for Human Development215 W. Pershing Road, 6th floorKansas City, MO 64108

artnering ogetherP tVOL. 2, ISSUE 5 MOFAMILYTOFAMILY.ORG

ourPartners

IPS for Kidsraining in InterdisciplinaryPartnerships and Services (IPS)or Kids is the LeadershipEducation in Neurodevelopmental

and Related Disabilities (LEND)raining program in Missouri. Te LEND programrovides intensive training or advanced graduatetudents and post-doctoral ellows in the eld oeurodevelopmental and related disabilities.573) 882-0757ps4kids.org

UMKC - IHDTe Instituteor HumanDevelopment, located

within the University Missouri-Kansas City, is an applied research andraining center or human services. It exemplieshe Universitys goals o academic excellence and aampus without borders by helping people, agencies,nd the community reach their ullest potential.800) 444-0821

www.ihd.umkc.edu

Department of Health & SeniorServices, Special Health ServicesProvides statewide health caresupport services, including servicecoordination, or children and

adults with special health care needs who meeteligibility requirements. Programs include:Children and Youth with Special Health CareNeeds, Healthy Children and Youth, MedicallyFragile Adult Waiver, and Adult Brain Injury.(800) 451-0669health.mo.gov/living/amilies/shcn

MissouriDevelopmentalDisabilities CouncilMDDC is aederally-unded,

23-member, consumer-driven council appointedby the Governor. Its mandate under P.L. 106-402,the Developmental Disabilities Assistance andBill o Rights Act, is to assure that individuals

with developmental disabilities and their amiliesparticipate in the design o and have access toneeded community services, individualized supports,and other orms o assistance that promote sel-determination, independence, productivity, andintegration in all aspects o community lie.(800) 500-7878moddcouncil.org

Family PartnershipTe Family Partnership was oby Special Health Care Needs

(SHCN), o the Missouri Department o Healtand Senior Services, to enhance the relationship

between SHCN and the amilies they serve. TFamily Partnership also serves as a means to prosupport and inormation to amilies o individu

with special health care needs and identies waamilies to connect with each other.(800) 779-8652moamilypartnership.org

Missouri Family to FamilyAt the MOF2F, we ofer Missouindividuals with disabilities andspecial health care needs o all a

their amilies and proessionals support, connecand opportunities to strengthen leadership skillparticipate in program & service decision-maki

When you connect with us, you are linking dirwith sel-advocates, parents, caregivers and ammembers whose lives are touched daily by healtor disability celebrations and challenges. Becauso our experiences, our inormation is ofered inperson-centered, easy to understand, and culturriendly way.(800) 444-0821moamilytoamily.org

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partnering together - your family's healthcare

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