27223 Health Notes 4/24/00 12:29 PM Page 1 CALIFORNIA STATE BOARD OF PHARMACY Special Edition in cooperation with CALIFORNIA HEALTH AND HUMAN SERVICES AGENCY S E T O N H Care of T Children & Adults with L Developmental Disabilities A E H 27223 Health Notes 4/24/00 12:29 PM Page 2 C E ONSUMER DUCATION AND C C OMMUNICATION OMMITTEE Dedicated to building bridges of communication with those Californians whose health depends on proper drug therapy, compliance with a treatment regimen and a healthier lifestyle. MEMBERS M. Standifer Shreve, Chair Caleb Zia Hope Tamraz, Staff C S ALIFORNIA TATE B P OARD OF HARMACY MEMBERS Rich Mazzoni, President Robert Elsner, Vice President Caleb Zia, Treasurer Sandra Bauer Darlene Fujimoto Donald W. Gubbins, Jr. John D. Jones Steve Litsey M. Standifer Shreve Holly Strom Andrea Zinder Patricia Harris, Executive Officer 27223 Health Notes 4/24/00 12:29 PM Page 3 Introduction Statewide Overview HEALTH NOTESis published I am honored to be a part of the by the California State Board of State Board of Pharmacy’s publica- Pharmacy’s Consumer Education tion HEALTH NOTES, which is and Communication Committee highlighting the important issue of to assist California pharmacists and other health care providers caring for children and adults with developmental disabilities. to be better informed on subjects of importance to As Secretary of the California Health and Human Services California consumers. Agency, I oversee thirteen State departments and two boards. This issue of HEALTH NOTES addresses the pharmacist’s These include the Departments of Aging, Alcohol and Drug role in providing counseling, health information, and health- Programs, Community Services and Development, Developmental related services to a unique and often underserved group of Services, Employment Development, Health Services, Mental individuals–children and adults with developmental disabilities. Health, Rehabilitation, and Social Services as well as the California In California, the term “developmental disability” is defined Workplace Investment Board, Emergency Medical Services by the State and refers to a severe and chronic disability that is Authority, Health and Welfare Data Center, Managed Risk attributable to a mental or physical impairment. The disability Medical Insurance Board, Office of Statewide Health Planning and must begin before the person’s 18th birthday, be expected to con- Development, and the Department of Child Support. tinue indefinitely, and present a substantial disability. Also, the Making sure all Californians are knowledgeable about the disability must be due to one of the following conditions: mental proper use of medication, especially for those with developmen- retardation, cerebral palsy, epilepsy, autism, or a disabling condi- tal disabilities, is of the utmost importance to me. Vulnerable tion closely related to mental retardation or requiring similar individuals oftentimes have complex medical issues and medica- treatment. The Department of Developmental Services is the tion regimens. Because of these medical issues, people with agency through which the State of California provides services developmental disabilities often require additional assistance with and support to children and adults with developmental disabilities. their care. Because of communication barriers, physical limitations, drug This assistance includes the pharmacist providing special con- sensitivity, and other health-related issues, individuals with devel- sultation and education to the person with the developmental opmental disabilities can be especially vulnerable to the incorrect disabilities, family members, and caregivers regarding the medica- use of medications. tion prescribed. It also requires additional monitoring of the Pharmacists can have a valuable influence on the health of prescribed medication for side effects and appropriate utilization. Californians with developmental disabilities by providing medica- I am pleased that the State Board of Pharmacy and the tion information and therapeutic resources that will help persons Department of Developmental Services have recognized the with developmental disabilities and their caregivers to properly importance of continuing education for pharmacists and profes- manage and monitor medications and to ensure that drug therapy sionals who serve people with developmental disabilities. I am outcomes are effective. confident that you will find the following articles both educational We anticipate that this issue of HEALTH NOTES will be a and helpful as you continue to provide service to Californians with valuable resource to assist pharmacists and other health care developmental disabilities. providers to better understand the special health care needs of individuals with developmental disabilities. Grantland Johnson Secretary, California Health and Marilyn Standifer Shreve Human Services Agency Editor, Health Notes Chair, Consumer Education and Communication Committee HEALTH NOTES Care of Children & Adults with Developmental Disabilities 3 27223 Health Notes 4/24/00 12:29 PM Page 4 H N E A LT H O T E S V O L U M E 1 , N U M B E R 4 Care of Children & Adults with Developmental Disabilities T A B L E O F C O N T E N T S Mission statement for this issue of Health Notes: to assist pharmacists in meeting the patient counseling mandate; to assist and optimize communication between lay people and professionals; and to highlight the unique needs of this special population. Introduction 3 Grantland Johnson, Secretary, Health and Human Services Agency 3 Marilyn Shreve, Chair, Consumer Education and Communication Committee 5 Cliff Allenby, Director, California Department of Developmental Services 5 Sandra Bauer, Public Member, California State Board of Pharmacy Part One: Different People, Different Challenges 7 Life Stories: Joe, Carrie, Judy, Terry and Donald Martha Pauli, M.Ed., Pharm.D., BCPP Linda Croslin, M.A. Part Two: Information for the Caregiver 15 How to Get the Most from Your Pharmacist and Pharmacy Paul Lofholm, Pharm.D. Part Three: Information and Resources for the Caregiver, the Pharmacist, and Other Health Care Professionals 21 People First Language Terrance Wardinsky, M.D. 22 The California Service Delivery System for Individuals with Developmental Disabilities Linda Croslin, M.A. 27 Resource List Part Four: Information for the Pharmacist and Other Health Care Professionals 29 Common Causes of Mental Retardation Terrance Wardinsky, M.D. 34 Psychotropic Medication Use in People with Developmental Disabilities Judy Curtis, Pharm.D., BCPP 39 Selected Tips for Counseling Individuals with Developmental Disabilities Fred Raleigh, Pharm.D., BCPP Lawrence J. Cohen, Pharm.D., BCPP, FASHP, FCCP, FASCP Martha Pauli, M.Ed., Pharm.D., BCPP Appendix 45 Continuing Education Questions and Exam Form 47 Acknowledgements * The views expressed by the individual authors are not necessarily the view of the Board of Pharmacy. 27223 Health Notes 4/24/00 12:29 PM Page 5 The Department of Develop- TO FAMILIES AND CAREGIVERS: mental Services (DDS) is one of The purpose of this HEALTH 13 departments composing the NOTES is to open the door to California Health and Human better communication between Services Agency. With an annual California pharmacists and their budget of over $1.9 billion, DDS patients. We know that successful provides services to more than communication between people 150,000 children and adults with developmental disabilities. requires the use of language that all participants understand. In These services are provided through State-operated develop- addition, it is helpful for everyone to have an understanding of mental centers and contracts with 21 nonprofit agencies known each other’s circumstances. as regional centers. Through our Wellness Initiative we are In order to be most helpful, pharmacists need to know about developing partnerships with State agencies, universities, and their patients–this includes how they live, their eating and sleep- professionals to promote the health and well-being of ing habits, how they get around in the community, and special Californians’ with developmental disabilities. problems they might have such as allergies or difficulty with DDS is collaborating on many educational projects with swallowing. Similarly, patients and their caregivers need to know regional centers, medical schools, and professional associations. about their pharmacists–the medical terms they use, the types of We are pleased to be a part of the State Board of Pharmacy’s edu- physical symptoms they watch for, and especially their ability to cational edition of the HEALTH NOTES “Care of Children & clarify directions for the use of medications. Adults with Developmental Disabilities.” We hope you enjoy the We hope that you will look through this monograph and find articles and find them useful. Thank you for your continuing articles that interest you, and that teach you new things about dedication and commitment to providing needed medical serv- people with developmental disabilities. If you use this informa- ices to individuals with developmental disabilities. tion, I know that you and the people you live and work with will be healthier. One important mission of the Board of Pharmacy is to promote better health through increased communication between pharmacists and the people who look to them for their health needs. We hope you find that this issue of HEALTH Cliff Allenby NOTEShelps you work with your pharmacist more closely. Director, Department of Good Health to You! Developmental Services Sandra K. Bauer Public Member, Board of Pharmacy HEALTH NOTES Care of Children & Adults with Developmental Disabilities 5 27223 Health Notes 4/24/00 12:29 PM Page 6 PART ONE: Different People, Different Challenges 27223 Health Notes 4/24/00 12:30 PM Page 7 Five Life Stories: Joe, Carrie, Judy, Terry and Donald Californians with Joe Joe is a 55-year-old man with Down syndrome. He is developmental independent, capable of taking care of his personal hygiene needs, and can use the local transportation disabilities are a diverse system. For the last fifteen years, Joe has lived in a community care group in terms of home with five other men and has attended art classes at a local activ- ity center. He has always taken pride in his artwork and enjoys lifestyles, ages, person- socializing with his friends at the center. However, he worries about alities, support, living his routine being changed and frequently asks center staff the same conditions, and medical questions repeatedly. Several of his pottery pieces have been sold in a local art gallery specializing in art made by persons with develop- conditions. These five mental disabilities. fictional life stories are Two months ago, Joe’s attendance at the activity center decreased. One day, after ten years of riding the same route, he took the wrong intended to illustrate bus home from the activity center. When found, he was disoriented some of the challenges and agitated. A few days later he got into a verbal battle with an activ- ity center teacher. His mood is less stable and he seems more anxious and opportunities lately. These changes are most evident in the evening. caregivers and health Joe’s caregiver states that she now has to assist him in basic daily care practitioners Martha Pauli, M.Ed., Pharm.D., BCPP Linda J. Croslin, M.A. encounter as they work Pharmacist Consultant, Private Practice, Community Program Specialist II Sacramento, CA, and Health and Wellness Section to improve the lives of Assistant Clinical Professor California State Department University of California, San Francisco, of Developmental Services School of Pharmacy Sacramento, CA those in their care. HEALTH NOTES Care of Children & Adults with Developmental Disabilities 7 27223 Health Notes 4/24/00 12:30 PM Page 8 living skills. Joe needs reminders and help to brush daily activities and caregivers. • Anxiety disorders and phobias are common among people with his teeth, comb his hair, and get fully dressed. Joe’s mild and moderate levels of developmental disabilities. caregiver decided to take him to the doctor for an • Heart and thyroid problems are common among persons with evaluation to determine why there have been Down syndrome. changes in his behavior and level of functioning. If Medication Issues these problems persist, Joe may be in jeopardy of • The amount of digoxin in the blood should be checked to help losing his residential and day program placements. evaluate changes in Joe’s mental status. Other laboratory tests such as potassium level and kidney (renal) function may also be His current medications include digoxin helpful in determining whether drug toxicity is present. If so, the (Lanoxin®) and furosemide (Lasix®) for his heart dosage may need to be adjusted, and/or other medications may function and lorazepam (Ativan®) for anxiety. After need to be added for treating Joe’s heart condition. • The use of a new family of antipsychotics is increasing for treat- seeing his physician, he was prescribed a new med- ing Alzheimer’s disease. Risperdone (Risperdal®) is used in low ication, risperidone (Risperdal®). A staff member of doses and may be a good choice for Joe, who is showing signs of the care home was surprised that he was a given a Alzheimer’s-type dementia. • Benzodiazepines such as lorazepam (Ativan®) are a family of drugs medication for severe mental illness (antipsychotic) used for anxiety, insomnia, seizures, and muscle spasms. Any of and worried he might be “overdosed” on such a these medications may cause amnesia, increased anxiety, and con- “strong” medication. This concern was brought to fusion, rather than decreasing these symptoms. This is more common in the elderly. Risk of falls also increases in this age group the attention of Joe’s pharmacist. when treated with benzodiazepines, and fractures that result can be a serious health issue. Most uses for benzodiazepines are short- Did you know that… term or only “as needed,” although some anxiety disorders may • Individuals with Down syndrome may begin to lose their ability need long-term therapy. It may be reasonable to consider lower- to reason and adapt by age 50. ing the dose or discontinuing lorazepam in Joe’s case. • The onset of Alzheimer’s disease in persons with Down syn- • Antidepressants (once thought of as only for depression) such as drome may occur at a younger age and may result in a more rapid Prozac®, Paxil®, Zoloft®, and Effexor® are useful for treating decline than in the general population. Drug treatment may help anxiety disorders. They need to be taken on a regular basis, not slow the rate of decline. when needed (“prn”), as is common with benzodiazepines. It • People with declining mental function adapt poorly to changes in takes several weeks of continuous therapy for beneficial effects their environment. A treatment goal is to maintain consistency in to be seen. What pharmacists do… • Pharmacies keep a record of all prescription medications dispensed to a patient. This patient profile may also include over-the-counter (nonprescription) medications and herbal or alternative therapies. • It is important to use onepharmacy to maintain onecomplete medication record. Patronizing one pharmacy will allow the pharmacist to keep a complete profile with all prescription medications, over-the-counter drugs, and alternative/herbal therapies being taken by the individual with developmental disabilities. The pharmacist is then able to evaluate the complete drug regimen and check for drug interactions, multiple medications being used for the same condition, appropriate doses, and so forth. This is sometimes referred to as “drug regimen review” or “drug use evaluation.” • California law requires that pharmacists offer to counsel patients on all new prescriptions. The pharmacist should provide directions on how to take the medication, storage instructions, and precautions about potential adverse effects. When appropriate, the pharmacist will provide additional information and advice on the use of unusual dosage forms (suppositories, inhalers, patches) or what to do if a dose of medication is missed. If a prescription is delivered to a person’s home, the pharmacist will most likely provide written information. Your pharmacist should also be available by telephone for additional questions about your prescription. 8 HEALTH NOTES Care of Children & Adults with Developmental Disabilities 27223 Health Notes 4/24/00 12:30 PM Page 9 Carrie is a 21-year-old Did you know that… Carrie • Caregivers and family members need education about seizures so woman with epilepsy and they can accurately observe and document seizure characteristics, asthma. She is able to frequency, possible triggers, etc. This is important information perform her basic self-care for medical professionals who don’t witness seizures. • Myoclonic seizures occur more frequently in persons with devel- needs but often requires reminding to wash her hair opmental disabilities. and clean her clothes. She has been reluctant to brush • People with seizures should carry identification such as a her teeth lately due to bleeding gums. Socialization is MedicAlert bracelet with information on medication usage, aller- gies, and past adverse reactions to medications. very important for Carrie, so she lives in a large apart- • Asthma is treated with two types of drugs. “Symptom reliever” ment complex. A roommate and staff from an agency medications include albuterol (a beta-agonist) or theophylline. that assists individuals with developmental disabilities Long-term controllers or asthma “preventer” medications include corticosteroids, cromolyn, or leukotriene modifiers. Some support her throughout the day. With the help of her asthma medications are swallowed (tablets and capsules), and roommate and the agency worker, Carrie keeps up others are inhaled directly into the lungs. Mild asthma may only the apartment, goes grocery shopping, and cooks. She require treatment with a symptom reliever drug used as needed (“prn”) and an asthma preventer drug taken on a regular basis, both works part-time at a chain restaurant where she sets in the form of inhalers. up the dining room before opening. • The pharmacist can teach and evaluate proper inhaler technique. Carrie has daily seizures that cause brief loss of con- This training should be regularly reinforced to ensure that the medication gets to the right spots in the lungs. The use of a sciousness (absence seizures), and she has more severe device called a “spacer,” which holds the drug before it is inhaled, seizures that involve movement, jerking of arms and makes sure the full amount of drug reaches the lungs. legs, and brief loss of consciousness (myoclonic • Women with developmental disabilities need the same “routine” health care as nondisabled females. This includes periodic breast seizures). Due to her myoclonic seizures, Carrie must exams, pelvic exams, and PAP smears. wear a protective helmet during the day. While wearing a helmet protects her head from harm, she Medication Issues: • A goal of antiseizure (anticonvulsant) therapy is to control seizure refuses to wear it consistently because it makes her activity with the fewest agents possible. Because these drugs have stand out in public. many side effects, it is especially important to avoid adding med- Carrie is friendly, but can be overly assertive and ications without evaluating whether other drugs can be discontinued. uncooperative at times. These moments are often fol- • Blood tests are common with anticonvulsant drugs to ensure that lowed by a myoclonic seizure. Afterward, Carrie is the proper dose is prescribed and to avoid toxic side effects. They usually extremely weak and sleepy. She takes several can also aid in assessing whether patients are taking their med- ications as prescribed. antiseizure (anticonvulsant) medications: phenytoin • An evaluation by a neurologist may be valuable because Carrie’s (Dilantin®), carbamazepine (Tegretol®), and divalproex seizures are not well controlled on her current three-drug com- (Depakote®). There are many days when Carrie is too bination, and she complains of oversedation. Carbamazepine may worsen absence seizures, and discontinuing this drug may be tired to get out of bed, possibly due to a combination helpful. Taking more doses toward the evening or at bedtime may of her medication regimen and seizures at night. decrease daytime drowsiness. Carrie’s asthma is controlled with oral theophylline • Regarding Carrie’s bleeding gums, phenytoin can cause a condition of gum overgrowth called “gingival hyperplasia” which can con- and inhaled albuterol (Ventolin®). Without help, tribute to dental cavities, bad breath and chronic gum infection. A Carrie cannot properly inhale her medication. Her good dental hygiene plan is needed to minimize this condition. wheezing is worse when she is emotionally upset or on Continued on page 13 poor air quality days. Carrie also takes birth control pills to help regu- late her menstrual cycle, to reduce pain from menstrual cramps, and for contraception. HEALTH NOTES Care of Children & Adults with Developmental Disabilities 9 27223 Health Notes 4/24/00 12:30 PM Page 10 Judy is a thin 40-year-old woman Judy with cerebral palsy who cannot walk or perform daily basic care Did you know that… needs. She lives in a six-bed home • People with cerebral palsy or Down syndrome may experience that specializes in caring for people with nursing needs. difficulty with eating and swallowing due to a loss of control of Judy requires transportation assistance to visit their throat muscles. Individuals who experience frequent muscle spasms can be at high risk for choking and inhaling food from the friends at a local adult activity center for people with mouth into the lungs (aspiration). developmental disabilities. She enjoys going shop- • Gastroesophageal reflux disease (GERD) is common in people with ping at the mall with activity leaders and eating at developmental disabilities. Symptoms include heartburn and pain or ulcers when stomach fluid leaks back into the esophagus. This McDonald’s. Her favorite activity is relaxing in the can result in serious complications, such as aspiration pneumonia. water at the community pool. Judy uses a reclining • Decreased movement, not drinking enough fluid, or not eating wheelchair that keeps her positioned properly for enough fiber make people with cerebral palsy especially prone to severe constipation. Ongoing bowel and bladder problems activities and must be repositioned by a caregiver will intensify with age. Help with a daily individualized exercise throughout the day to prevent pressure sores. routine and use of a bowel regimen (a stool softener and a stim- The medications she takes are lorazepam ulant laxative such as one with bisacodyl or senna) is essential. • Nutritional deficits, hormonal or bone abnormalities, limited muscle (Ativan®) to relax her muscles; cisapride activity, and medication usage place people with cerebral palsy or (Propulsid®) to assist the movement of food other developmental disabilities at risk for developing osteoporosis. through her digestive system; docusate (Colace®), a • Muscle relaxants, including benzodiazepines like lorazepam (Ativan®) are used to help relieve rigidity and muscle spasms in stool softener; bisacodyl (Dulcolax®), a laxative; people with cerebral palsy. calcium carbonate, a dietary supplement to prevent Medication Issues osteoporosis; cotrimazole (Bactrim®) to prevent • Cisapride (Propulsid®) can cause life-threatening heart rhythm urinary tract infections; and oxybutynin disturbances (arrhythmias) when taken with certain foods and (Ditropan®) for bladder spasms. medications. It should not be used with grapefruit juice, anti- fungals, erythromycin, clarithromycin (Biaxin®), cimetidine (Tagamet®), some antidepressants, and some drugs for heart rhythm problems (antiarrhythmics). A pharmacist can provide a Judy’s favorite activity is relaxing complete list of drug interactions. {Author’s Note: As of press in the water at the date, the manufacturer has announced that it will initiate a limited-access proram and will voluntarily stop marketing community pool. Propulsid® in the U.S. by July 2000. Your pharmacist can suggest an alternative medication if necesary.} • Judy may need to be evaluated for GERD. Drugs that block the release of acid into the stomach–the proton pump inhibitors Prilosec®, Prevacid®, Aciphex®–are the most effective treat- ment for GERD. It also may be beneficial to minimize the use of coffee, alcohol, fats, chocolate, nicotine, and drugs that slow intestinal movement such as oxybutynin (Ditropan®). • Judy may benefit from a bone mineral density test to evaluate the effectiveness of her calcium supplementation. This measure of osteoporosis is sometimes available in pharmacies as well as in doctor’s offices. • It is important to have adequate fluid intake to minimize consti- pation and allow the safe elimination of Bactrim®by the kidneys. Bactrim®can cause sensitivity to ultraviolet light, so sunscreens and protective clothing should be worn when outdoors. 10 HEALTH NOTES Care of Children & Adults with Developmental Disabilities