TAKING OWNERSHIP OF HEALTH CARE

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1 TAKING OWNERSHIP OF HEALTH CARE TIPS FOR PARENTS AND CAREGIVERS Are yu ready fr the day when yu take yur sn r yur daughter fr a medical appintment and the dctr r medical staff says t yu, as the parent r caregiver, Yur yung adult is nw ld enugh t talk t me n their wn? What if yur sn r daughter tells yu they are ld enugh t talk t their dctr n their wn? Are yu prepared? D yu think that yur sn r daughter is prepared t begin self-managing their health and wellness with just yur supprt? Parents and ther caregivers are regularly in charge f their child s health care. Fr many parents, the idea that ne day their sn r daughter may be independent seems impssible, r even impractical. We get stuck in the present. We have difficulty envisining a future when ur children are grwn and independent. The gal fr every child is t develp as much independence and selfawareness as they can. Hw can we help them t be as independent, selfaware, and self-directed abut their wn health as pssible? What is Taking Ownership f Health Care? Taking wnership f health care is the prcess f taking charge f ne s wn health care. We all, including children and yung adults, need t learn t speak up fr urselves and build a netwrk f trusted individuals ready t assist when needed. Based n varying capabilities, sme children may require cntinued supprt, pssibly significant, as they reach adulthd. Fr parents and caregivers, we must recgnize a persn s inherent desire t be valued as an individual with a unique stry, perspective, hpes, and dreams. The prcess f taking wnership f health care includes three key cmpnents: 1. An awareness f wh yu are as an individual 2. Knwing yur needs and desires 3. Understanding hw t wrk with ther peple and systems in rder t have yur needs met Smetimes these are achieved with the assistance f a netwrk f supprt that includes parents and thers wh care. Emplyment and Disability Institute, ILR Schl and Crnell University 1

2 WHY IS TAKING OWNERSHIP IMPORTANT IN RELATION TO HEALTH CARE? Parents and caregivers cannt meet a child s health care needs frever. A natural prgressin in child and yuth develpment is t gradually assume mre respnsibility fr and cntrl ver a persn s wn bdy. A child s feelings f identity, self-wrth, and capability are derived in part frm being in cntrl. When a persn ges t cllege, pst-secndary educatin r training, a jb, independent living r a residential setting, health care needs cntinue t be an imprtant aspect f daily life. T successfully access adult service systems, yung adults, t the best f their abilities, need t knw their diagnsis, cnditin, r disability and special health issues, and understand the supprts needed. GETTING STARTED 1. Start at an Early Age Maximize pprtunities fr children t learn abut and understand health cnditins, treatments, and health care rutines. 2. Assess yur child s Health-Related Skills and Knwledge Assess current level f understanding and participatin in attending t health care needs Discuss medical cnditin and diagnsis with yur child. Advance the cnversatin ver time as a child develps and as age-apprpriate. Children are aware f their differences. Children benefit frm pen discussins that help t identify the tls and supprts needed t achieve valued utcmes related t health care. Explain health care rutines, including treatments and medicatins, based n the child s develpment, in ageapprpriate ways. Is yur child currently directing r participating in the cmpletin f health care rutines? Explain health insurance and using health insurance cards at appintments. Emplyment and Disability Institute, ILR Schl and Crnell University 2

3 Explre ptential ability t increase participatin in health care rutines Give yur child the age-apprpriate vcabulary needed t be an active participant. Teach wrds r alternate cmmunicatin methds t describe feelings and symptms. Encurage and prvide pprtunities fr yur child t speak and cntribute t cnversatins abut health care at the dctr s ffice, schl meetings, clinics, etc. Lk fr signs that indicate yur child is ready t learn mre abut a specific health care cnditin and take respnsibility fr sme health care rutines. Is he asking questins? Is she trying t participate? Prvide the pprtunity fr making chices thrughut the daily rutine t develp decisin-making skills. Chices regarding health care rutines can be gradually built int this prcess. Understanding healthy habits and basic health principles and the effect f special health care needs and disability n individual health decisins Mdel effective partnerships with prfessinals and help develp trusting relatinships with yur child s team. Discuss general health rutines regarding diet, exercise, and rest. Start early t teach special cnsideratins warranted by a physical cnditin. 3. Break dwn health care tasks Medicatin: Des yur child, as a teen r yung adult, knw the purpse f medicatin(s)? What happens if a medicatin is nt taken? What if t much is taken? What are the side effects? Can yur child call r mail in a prescriptin refill? Can yur child manage picking up a prescriptin at the pharmacy r make the necessary arrangements? Tasks: Can yur child describe the tasks and assistance needed? Is yur child able t participate in any prtin f a treatment regimen by making chices r actually cmpleting part f the task with supprt? Daily rutines: Des yur child knw when smething is nt right in his r her daily rutine? Des yur child knw hw t get help regarding this? Emplyment and Disability Institute, ILR Schl and Crnell University 3

4 Appintments: Can yur child recrd a dctr s appintment n the family calendar r keep a lg n their cmputer? Can yur child lcate his r her dctr s phne number t arrange an appintment r change an appintment? Schl nurse: Is yur child respnsible fr reprting t the schl nurse fr needed treatments r medicatins? Can yur child learn t d this rather than being called by the nurse r reminded by the teacher? Healthy chices: Is yur child encuraged t be respnsible fr healthy chices thrughut the day t prmte maximum wellness? Can yur child make healthy fd chices and persnal hygiene decisins, and take care f needs related t a specific health cnditin? Self-advcacy: As early as the elementary schl grades, create pprtunities fr yur child t practice self-advcacy skills, including self-disclsure and requests fr accmmdatins at Cmmittee n Special Educatin (CSE) r ther meetings. Health insurance: Des yur child carry their health insurance cards, r cpies f them? D they understand hw they are used? PREPARING FOR TRANSITON FROM HIGH SCHOOL Use a team apprach with yur child and ther CSE members t ensure that health-related skills are incrprated int the Individualized Educatin Plan (IEP). Yur child needs t learn abut health care service systems and t practice hw t access these systems t prepare fr adulthd. D nt wait until transitin age t frmally address health care in the IEP. Yu and yur child knw what needs must be addressed fr a successful transitin. Identify and clearly cmmunicate these needs. Be assertive and advcate. Make sure yur child is invlved and becmes a self-advcate thrughut the schl years and beynd. Additinal Resurces The NYS Institute fr Health Transitin Training The Self-Determinatin Synthesis Prject (Cmprehensive gvernment funded synthesis site): The site includes lessn plans and parent resurces fr the transitin-aged adlescent. Includes exemplar prgram sites and resurces fr yuth. Emplyment and Disability Institute, ILR Schl and Crnell University 4

5 The Yuthhd: A site fr yuth and the adults in their lives. Addresses setting gals and planning fr the future. Includes a cntent sectin entitled The Health Clinic which engages yuth in develping an understanding f their health, becming their wn advcate, and understanding health insurance issues. The Beach Center n Disability: The site includes the Arc s Self- Determinatin Scale fr adlescents with cgnitive disabilities. Wallet-size prtable health recrd Self-Determinatin Resurce Web site Parent Page University f Oklahma, Zarrw Center n Self-Determinatin: Includes the AIR Self-Determinatin Assessments, self-determinatin educatinal materials, and resurces. Wrightslaw Guidance page n self-advcacy: Includes many links t ther sites and resurces. In preparatin fr pssible accidents, severe illness, r medical need, all families shuld cnsider self-determinatin in the area f advance directives. My Health, My Chice, My Respnsibility: A training prgram t help individuals with develpmental disabilities make healthy chices in daily life and speak up fr gd health. The Gateway t Self-Determinatin Web Prtal: A clearinghuse n resurces, training, and infrmatin n self-determinatin. This site prvides a single access fr self-advcates, prfessinals, plicy-makers, and the general public n the current best practices and evidence-based activities in enhancing self-determinatin in the lives f peple with develpmental and intellectual disabilities, as well as any individual. Emplyment and Disability Institute, ILR Schl and Crnell University 5

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