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Provides direction on how to find a pediatric specialist and health care facility. Lists a patient’s rights and responsibilities, and explains how to obtain medical records. Addresses the following health care topics, listing corresponding providers: Critical Care, Home Health Care, Immunizations, Medical Screenings, Dental Care, Cardio-Pulmonary Resuscitation, Medical Equipment, and Rehab Technology Services. Offers tips on how to talk to your child’s physician, and how to handle a child’s stay in the hospital.
How to Find a Pediatric Specialist
Links to Pediatricians
Specialized Pediatric Health Care Facilities
What is Critical (Intensive) Care?
What Parents Should Know About Home Health Care
Providers of Medical Screenings
Where to Find a Medical Advocate
When Your Child is in the Hospital
Where To Learn Cardio-Pulmonary Resuscitation (CPR)
What Families Should Know About Home Medical Equipment and Rehab Technology Services
Providers of Medical Equipment and Rehab Technology
Where To Find More Information About Medical Equipment and Rehab Technology
Funding Sources for Medical Equipment
How to Find a Pediatric Specialist
Selecting a Pediatrician or Pediatric Specialist for your child’s health care needs is one of the most important decisions you will make. Here are some guidelines to get you started:
Begin Early
If you’re an expectant parent, start looking for a pediatrician three months prior to the baby’s birth. If you already have a child, and he or she does not have a pediatrician, begin today.
Talk With Your Primary Care Physician (PCP)
If you belong to a managed care organization or HMO, ask your primary care physician for direction. You may need to consider guidelines set by your insurance carrier.
Ask Your Friends
Ask your friends, acquaintances, co-workers, and neighbors some questions about their pediatrician: Does the pediatrician welcome questions and take time to discuss problems? How patient and helpful is the pediatrician and office staff? What style of medicine does the pediatrician practice?
Consider the Office Location
If possible, choose a pediatrician whose office is located near your home, office, baby sitter, or daycare center.
Take a Trip
Make your list, and then narrow it to the top one or two. Call the physician’s office to schedule an interview. Prepare a list of questions in advance.
Think It Over
After your visit, take a day or two to think about what you have been told before making decisions.
The following local hospitals and health care agencies can connect you to hundreds of pediatric specialists in Western Pennsylvania, and help you find a physician who can best serve the needs of your child and accommodate your concerns regarding insurance coverage, location, and office hours. You also may check with your health insurance program, or call the Allegheny Medical Society at 412-321-5030.
Allegheny University Hospitals................................................................................................................ 888-AGH-2800
Allegheny General Hospital, General Physician Access
Children’s Hospital of Pittsburgh, Pediatric Health Link........................................................................ 412-692-7337
Physician Referral Service.................................................................................................................. 412-692-PEDS
The Children’s Institute................................................................................................................................ 412-420-2400
UPMC Mercy.................................................................................................................. 412-232-5660 or 800-232-5660
UPMC Health System............................................................................................. 800-533-UPMC or 412-647-UPMC
Specialized Pediatric Health Care Facilities
Albert Gallatin Home Care and Hospice.................................................................................................. 800-753-2425
................................................................................................................................................................... 714-438-6660
Allegheny County Health Department...................................................................................................... 412-687-2243
Infectious Diseases (Immunizations only)........................................................................................... 412-578-8060
Wilkinsburg Family Health Center........................................................................................................ 412-247-5216
Allegheny University Hospitals.................................................................................................................. 412-359-3131
Allegheny General Hospital................................................................................................................... 412-359-3131
Pediatric Children and Adolescent Wellness Center........................................................................ 412-359-3157
Child’s Way................................................................................................................................................... 412-365-6065
Children’s Hospital of Pittsburgh (All departments)................................................................................ 412-692-5325
Primary Care Center............................................................................................................................... 412-692-6000
UPMC Mercy................................................................................................................................................. 412-232-8111
Inpatient Pediatrics.................................................................................................................................. 412-232-775
....................................................................................................................................................... EMER 412-232-5600
UPMC Mercy Children’s Medical Center.................................................................................................. 412-232-7751
.................................................................................................................................................................... 412-232-7683
....................................................................................................................................................... EMER 412-232-8112
UPMC Mercy Children’s Medical Subspecialty Center.......................................................................... 412-232-7751
.................................................................................................................................................................... 412-232-7683
....................................................................................................................................................... EMER 412-232-8112
UPMC Mercy Neonatal Intensive Care..................................................................................................... 412-232-7388
....................................................................................................................................................... EMER 412-232-7551
UPMC Pediatrics Intensive Care Unit (ICU)............................................................................................ 412-232-5556
.................................................................................................................................................................... 412-232-7388
....................................................................................................................................................... EMER 412-232-5600
The Children's Home of Pittsburgh/
Transitional Infant Care Hospital............................................................................................................... 412-441-0700
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Providers of Medical Care
Albert Gallatin Home Care and Hospice.................................................................................................. 800-753-2425
................................................................................................................................................................... 714-438-6660
Allegheny County Department of Human Services................................................................................ 412-350-5706
Office of Mental Retardation/Developmental Disabilities................................................................. 412-350-3695
(Services provided through Independent Support Coordinators (ISCs))
Allegheny County Health Department...................................................................................................... 412-687-2243
Infectious Diseases (Immunizations only)........................................................................................... 412-578-8060
Tuberculosis (TB) Program................................................................................................................... 412-578-8084
Wilkinsburg Family Health Center (Also offers referrals).................................................................. 412-247-5216
Women, Infants, and Children (WIC) Program.................................................................................... 412-350-5801
Allegheny University Hospitals.................................................................................................................. 412-359-3131
Allegheny General Hospital................................................................................................................... 412-359-3131
Pediatric Children and Adolescent Wellness Center........................................................................ 412-359-3157
Allegheny Valley Hospital...................................................................................................................... 724-226-7230
Arthritis Foundation, Western PA Chapter............................................................................................... 412-566-1645
.................................................................................................................................................................... 800-522-9900
Automated Health Systems, Inc................................................................................................................. 800-543-7633
.................................................................................................................................................................... 412-367-6184
The Carnegie Library of Pittsburgh
Health Education Library Program (Consultations only)................................................................... 412-622-3138
Child’s Way................................................................................................................................................... 412-365-6065
Children’s Hospital of Pittsburgh (All departments)................................................................................ 412-692-5325
The Children’s Institute................................................................................................................................ 412-420-2400
East Liberty Family Health Care Center, Inc............................................................................................ 412-661-2802
The Epilepsy Foundation of Western PA (Referrals only)..................................................................... 412-261-5880
................................................................................................................................................................... 800-361-5885
Focus on Renewal Sto-Rox Neighborhood Corp................................................................................... 412-771-6460
Interim Pediatrics.......................................................................................................................................... 412-683-2227
Liken Health Care, Inc................................................................................................................................. 412-816-0113
Lupus Foundation of America, Western PA Chapter, Inc. (Referrals only)......................................... 412-261-5886
................................................................................................................................................................... 800-800-5776
McGuire Memorial........................................................................................................................................ 412-734-0134
.................................................................................................................................................................... 724-843-3400
UPMC Mercy Hospital of Pittsburgh.......................................................................................................... 412-232-7388
Adoption Resource Center of Pittsburgh............................................................................................. 412-575-5805
(Medical history)
Inpatient Pediatrics.................................................................................................................................. 412-232-8293
.................................................................................................................................................................... 412-232-7388
....................................................................................................................................................... EMER 412-232-5600
UPMC Mercy Children’s Medical Center............................................................................................. 412-232-7751
................................................................................................................................................................... 412-232-7683
....................................................................................................................................................... EMER 412-232-8112
UPMC Mercy Children’s Medical Subspecialty Center..................................................................... 412-232-7751
.................................................................................................................................................................... 412-232-7683
....................................................................................................................................................... EMER 412-232-8112
UPMC MercyLink.................................................................................................................................... 412-232-5660
(Physician and service referral network).............................................................................................. 800-232-5660
UPMC Mercy Neonatal Intensive Care................................................................................................ 412-232-7551
UPMC Mercy Obstetrics and Newborn Nursery................................................................................. 412-232-8280
.................................................................................................................................................................... 412-232-7388
UPMC Mercy Pediatrics Intensive Care Unit (ICU)............................................................................ 412-232-5556
....................................................................................................................................................... EMER 412-232-5600
Muscular Dystrophy Association (MDA) of Southwestern and Midwestern PA.................................. 412-823-4094
National Multiple Sclerosis Society, Allegheny District Chapter........................................................ 800-FIGHT MS
.................................................................................................................................................................... 412-261-6347
Staff Builders Health Care Services.......................................................................................................... 412-781-4260
The Children's Home of Pittsburgh
Transitional Infant Care Hospital............................................................................................................... 412-441-4884
UPMC Health System............................................................................................................................... 412-647-UPMC
Cleft Palate-Craniofacial Center........................................................................................................... 800-408-7390
.................................................................................................................................................................... 412-648-8400
In-Home Services Network.................................................................................................................... 888-860-2273
Integrated Pharmacy Services.............................................................................................................. 412-648-6091
(Retail and mail order)............................................................................................................... EMER 412-648-6029
UPMC St. Margaret................................................................................................................................. 412-784-4000
....................................................................................................................................................... EMER 412-784-4187
Ventilator Assisted Children/Home Program,
Children’s Hospital of Pittsburgh (Consultation)................................................................................ 412-692-6494
The Western Pennsylvania Hospital......................................................................................................... 412-688-7706
As A Patient, You Have The Right To:
● Impartial access to the medical resources of the hospital as indicated for appropriate care without regard
to race, color, creed, national origin, sex, handicap, or source of payment.
● Considerate, respectful care provided by competent personnel at all times and under all circumstances.
● Emergency procedures that are implemented without unnecessary delay.
● Care that includes consideration of your unique medical, psychosocial, emotional, and spiritual needs,
and that recognizes and respects the cultural variables specific to you and your family.
● Respect for your privacy to the fullest extent possible consistent with the care prescribed.
● Confidentiality regarding all records pertaining to your care, including the source of payment for your
treatment, except when appropriate consent is given by you or your parent or guardian or as otherwise
provided by law or third-party contract.
● Quality care and high professional standards that are continually maintained and reviewed.
As a Patient or Parent/Guardian Acting on Behalf of the Patient, You Have The Right To:
● Know the identity and professional status of those physicians, nurses, and staff members taking care of
you, and which physician is primarily responsible for your care.
● Be informed in language you understand of your diagnosis, the treatment recommended, and the
prognosis of your illness.
● Know the reason why various tests, treatments, and procedures are recommended, and who will
administer them.
● Know the general nature and risks of any procedure or treatment that is recommended.
● Refuse any drug, treatment, or procedure to the extent permitted by law and be informed of the
consequences of your refusal by the physician.
● Cross out and initial any part of the consent form that you do not want applied to your care.
● Convey in advance (advance directives) your wishes regarding extraordinary treatment or the person you
would like to make decisions for you should you become unable to speak for yourself.
● Request and obtain a consultation or second opinion from another physician at your own expense.
● Know that, except in the case of emergency, physicians will obtain informed consent before the start of
any treatment or procedure, or both.
● Be informed if your physician is considering you as part of a medical research program and withdraw or
refuse to participate without fear that your care will be compromised.
● Request and obtain a consultation with the Human Rights Committee of the hospital when conflict,
concern, or confusion exists about your care.
● Expect tests and procedures to be done in a timely manner and with as little discomfort as possible.
● Obtain, whenever possible, an interpreter if you don’t speak English.
● Be able to review your medical record or obtain copies of it.
● Be informed of your continuing health care needs at the time you are discharged, and be assisted or
educated about how to meet those needs.
● Request and receive an itemized and detailed explanation of the services rendered.
● Receive full information and assistance on the available financial resources for your health care.
● Be informed as early as possible following your admission to the hospital of your rights and
responsibilities.
● Speak openly about any question, concern, or complaint you have regarding any aspect of your care by
talking directly with those involved in your care or the hospital’s patient representative.
In Turn, Patients and the Parents/Guardians Acting on a Patient’s Behalf, Have the Responsibility to:
● Provide physicians and hospital personnel with accurate information related to your condition and care.
● Cooperate and follow the care recommended by your physician, nurses, or other health care
professionals.
● Notify your physician or nurse if you do not understand something about your diagnosis, treatment, or
prognosis.
● Accept responsibility for medical consequences that result from refusing any treatment or from not
following the instructions of your physician and hospital personnel.
● Accept the financial obligations associated with your care.
Know and follow the hospital rules and regulations.
● Use hospital property carefully so that it remains in good condition for others.
● Be considerate of the rights of other families, patients, and hospital personnel, and assist in the control of
noise and the number of visitors.
● Take care of valuables and personal items, because the hospital cannot assume responsibility for
personal items lost through carelessness.
● Advise the nurse, physician, or patient representative of any concerns you may have in regard to your
care so that he or she may resolve your concerns as early as possible.
● Observe the hospital’s no smoking policy.
(Source: Children’s Hospital of Pittsburgh.)
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How To Obtain Medical Records
A medical provider’s Medical Records Department maintains records for all inpatient, same-day surgery, and outpatient services. Access to medical records is protected by Pennsylvania State Department of Health regulations. Copies of records may be released upon receipt of written authorization from the patient (if 18 years of age or older) or the parent. Usually there is a charge for this service, unless the copies are requested to maintain continuity of care. For more information about obtaining copies of your child’s medical records, contact the Medical Records Department of your medical provider.
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What Is Critical (Intensive) Care?
Critical Care - or Intensive Care - is intense, well-monitored treatment for children who are critically ill, severely injured, have severe disease, and/or have undergone major surgery leaving them dependent upon life support, at least in the short term.
In most cases, children have at least one vital organ system that has failed. It may involve respiration, the cardiovascular system, the kidneys and/or major neurological failure. The child’s condition usually is unstable and in a rapid rate of change, requiring close observation and immediate physician availability.
Critical Care also can assist a child who is in chronic need of respiratory support with a ventilator but otherwise in good condition.
If a child needs critical care, parents usually contact their physician first, who then refers the child, if necessary, to an intensive care unit.
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Allegheny University Hospitals.................................................................................................................. 412-359-3131
Allegheny General Hospital................................................................................................................... 412-359-3131
Children’s Hospital of Pittsburgh............................................................................................................... 412-692-5325
Emergency Department.......................................................................................................................... 412-692-5555
Intensive Care Unit, Pediatric................................................................................................................ 412-692-6259
Neonatal Intensive Care Unit (NICU)................................................................................................... 412-692-5030
UPMC Mercy................................................................................................................................................. 412-232-7388
Inpatient Pediatrics.................................................................................................................................. 412-232-8293
....................................................................................................................................................... EMER 412-232-5600
Pediatrics Intensive Care Unit (ICU).................................................................................................... 412-232-5556
....................................................................................................................................................... EMER 412-232-5600
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What Parents Should Know About Home Health Care
By Gail Ratliff Woomer, MN, RN, IBCLC, Clinical Nurse Specialist,
VNA HealthCare Services
Home with their family. That’s where children want to be, including children with medical needs and other health needs. There is less chance of picking up an infection at home, and the home is the best place for a child’s growth, development, and family bonding.
Key To Success - Planning and Preparation
Thanks to innovative medical technology and specialized home care services, today most children who are clinically stable can be cared for at home. Children no longer must be confined for long hospital or institutional stays. This trend is good news for children and their families. However, it means that parents and caregivers must prepare to meet the needs of a child who receives treatment at home. The key to successful home care for your child is planning and preparation.
Children Who Are Eligible
Children and families who may benefit from receiving home health care include:
● Infants with complications of prematurity, birth anomalies, or disabilities.
● Children with illnesses, surgeries, or traumatic injuries, including children who are technology-
dependent, and who need special medical equipment and supplies, including intravenous therapies.
● Children in a terminal stage of disease who may benefit from a pediatric hospice program.
● Children with special needs (i.e., neuro-developmental delays) who can receive rehabilitation therapies
in the home (see Page 10 for information on Early Intervention).
Questions To Consider When Selecting a Home Health Agency
● How many years has the agency been in business? What is its reputation? Are references available for
this agency from other health care professionals and physicians?
● Is the agency Medicare/Medicaid certified? Accredited by JCAHO (Joint Commission on Accreditation of
Healthcare Organizations)?
● Does it provide case management services and primary nursing?
● Are services and support available 24 hours a day, 7 days a week?
● How responsive and courteous is the agency to my call, needs, and questions?
● Does the agency manage billing on behalf of the client? Will it investigate and provide consultation on
my insurance coverage?
● What are the qualifications of the caregivers assigned to care for my child? Are they credentialed and
licensed?
● Is there a quality assurance program in place?
● Is there adequate back-up coverage if necessary?
Family-Focused Care
Home health care is family-focused, and communication is family-centered. You and your family control the environment. The goal is to help you reach the highest level of independence, health, and well-being. This requires the agency to provide on-going support, family education and training, and good coordination of services.
Length of Service
How long your child receives home care services depends on your child’s medical needs. Services will be provided as long as the pediatrician feels they are necessary. In addition to skilled, intermittent services, you may be eligible for respite care for blocks of time so that you can rest, shop, or take care of siblings if your child requires continuous complex care. The amount of in-home private duty care or respite care depends on the unique needs of each child/family.
The Treatment Team
The treatment team that coordinates and delivers your child’s home health services may include
professional nurses, rehabilitation therapists, and social workers. The services must be medically indicated and provided under the pediatrician’s plan of care. While your child receives home care services, you can have the opportunity to learn about community resources, organizations, and support groups that offer long-term support and care.
Financial Concerns
Financial concerns often are the single most stressful issue for a family. Your family should have a thorough understanding of all the costs of caring for your child at home. Health care professionals should identify available resources to help pay for services, supplies, and medication, and help support appropriate planning for your child’s care needs. It is important for parents to be proactive at all stages in arranging home care for their child. They must inform themselves about every detail of benefits in their health insurance/HMO policy, what is covered and what is not.
Financial support may come through insurance and managed care plans, state Medicaid and Medicaid spend-down programs, Children with Special Needs programs, and federal and state waiver programs (See Section 3 for more information on these programs). Each situation is unique, depending on the family’s financial needs and the child’s care needs. The hospital discharge planner/social worker will discuss in detail the programs available for your child.
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(In addition to the following list of service providers, see the yellow pages of your phone book.)
Albert Gallatin Home Care and Hospice.................................................................................................. 800-753-2425
................................................................................................................................................................... 724-482-4183
Allegheny County Health Department...................................................................................................... 412-687-2243
Maternal and Child Health Program..................................................................................................... 412-578-8000
Arthritis Foundation, Western PA Chapter................................................................................................800-522-9900
.................................................................................................................................................................... 412-566-1645
Children’s Hospital of Pittsburgh............................................................................................................... 412-692-5325
Family Care Connection........................................................................................................................ 412-692-5325
Interim Pediatrics.......................................................................................................................................... 412-683-2227
Interim Health Care, Mental Health Department................................................................................. 412-683-2227
Liken Health Care, Inc................................................................................................................................. 412-816-0113
Long Run Children’s Learning Center...................................................................................................... 412-751-9022
South Hills Health System.......................................................................................................................... 800-368-4663
.................................................................................................................................................................... 412-469-7171
Southwest Services, Inc.............................................................................................................................. 412-531-4803
Staff Builders Health Care Services.......................................................................................................... 412-781-4260
Three Rivers Center for Independent Living............................................................................................ 800-633-4588
.................................................................................................................................................................... 412-371-7700
.......................................................................................................................................................... TDD 412-371-6230
UPMC Health System............................................................................................................................... 412-647-UPMC
In-Home Services Network.................................................................................................................... 888-860-2273
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Although a child may have special needs, he or she still needs to be immunized. However, in some conditions, certain immunizations are not recommended. Please talk to your physician before immunizing your child. Also check to see if your health insurance plan mandates that you use certain immunization agencies.
Immunization is one of the most effective ways to protect your child against 10 diseases: measles, mumps, rubella, diphtheria, tetanus, pertussis (whooping cough), polio, HIB disease, hepatitis B, and chicken pox. These diseases still can strike unprotected children and adults and lead to pneumonia, choking, brain damage, heart problems, blindness, and even death.
Children need most of their shots by age 3. Vaccines are usually given at the following ages: Birth to 2 months; 4 months; 6 months; 12-18 months, and 4-6 years. Inoculations required for kindergarten through 12th grade are the primary series of measles, mumps, rubella, diphtheria, tetanus, and polio. By law children entering kindergarten or first grade must be vaccinated against hepatitis B and have additional doses of diphtheria, tetanus, and measles vaccines.
All of these vaccines are safe but, like any medicine, can cause mild reactions, such as a sore arm or slight fever. Serious reactions are rare. Children are in much greater danger from the diseases than from the vaccines. Many of the commonly used vaccines for various diseases can safely be given on the same day.
For more information about immunizations, Susanne Thomas RN, M.Ed, Allegheny County Health Department, Immunization/Infectious Diseases Program recommends the following Web sites:
Vaccine Education Center, http://www.chop.edu
Every Child by Two, http://www.ecbt.org and http://www.vaccinateyourbaby.org
Childhood Immunization Support Program, American Academy of Pediatrics, http://www.cispimmunize.org
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Allegheny County Health Department...................................................................................................... 412-687-2243
Infectious Diseases................................................................................................................................. 412-578-8060
Allegheny University Hospitals.................................................................................................................. 412-359-3131
Allegheny General Hospital................................................................................................................... 412-359-3131
Pediatric Children and Adolescent Wellness Center........................................................................ 412-359-3157
Automated Health Systems, Inc................................................................................................................. 800-543-7633
.................................................................................................................................................................... 724-543-7633
Community Human Services Corporation................................................................................................ 412-621-4707
.................................................................................................................................................................... 412-621-4706
East Liberty Family Health Care Center, Inc............................................................................................ 412-661-2802
UPMC Mercy................................................................................................................................................. 412-232-7388
UPMC Mercy Children’s Medical Center............................................................................................. 412-232-7751
.................................................................................................................................................................... 412-232-7683
....................................................................................................................................................... EMER 412-232-8112
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Screening tests can play an important role in the overall care, health, and well-being of your child. A child can be screened to monitor his or her medical, developmental, and educational status. Knowing this information early on can help prevent or significantly reduce future problems. In general, screening tests are brief and less invasive than diagnostic tests. However, if a child tests positive during a screening, more detailed diagnostic tests usually follow.
Medical and developmental screenings are given routinely to check a child’s growth, hearing, vision, speech, blood lead level, motor development, and urine.
Children with special needs may require additional screening tests in areas such as genetics; for specific diseases, such as tuberculosis or cystic fibrosis; or for overall development. Repeated screenings may be necessary to track the child’s development and growth over time.
Your child’s primary care provider (PCP) should coordinate the majority of the screening tests your child receives, including those that are part of the state’s Early Periodic Screening Diagnostic Treatment (EPSDT) program for qualifying children (see page 43 for more information on EPSDT).
In addition, screening for learning and educational issues may be conducted by your child’s school. Developmental screenings often are coordinated by your county’s Early Intervention program (in Allegheny County, this is the Alliance for Infants and Toddlers, Inc.). Schools also can do vision screenings.
It is important for you to stay informed about screening tests for your child. Your child’s pediatrician can be a good source of information.
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Providers of Medical Screenings
Allegheny County Health Department...................................................................................................... 412-687-2243
Tuberculosis (TB) Program.................................................................................................................... 412-578-8084
Allegheny University Hospitals.................................................................................................................. 412-359-3131
Allegheny General Hospital................................................................................................................... 412-359-3131
Pediatric Children and Adolescent Wellness Center................................................................... 412-359-3157
Allegheny Valley Hospital...................................................................................................................... 724-226-7230
Alliance for Infants and Toddlers, Inc........................................................................................................ 412-885-6000
Automated Health Systems, Inc................................................................................................................. 800-543-7633
(Provides referrals).................................................................................................................................. 724-543-7633
Children’s Hospital of Pittsburgh............................................................................................................... 412-692-5325
(All departments)
East Liberty Family Health Care Center, Inc............................................................................................ 412-661-2802
Magee-Womens Hospital
Magee Outpatient Clinic........................................................................................................................ 412- 641-4455
UPMC Mercy................................................................................................................................................. 412-232-7388
Adoption Resource Center of Pittsburgh............................................................................................. 412-575-5805
UPMC Mercy Children's Medical Center............................................................................................. 412-232-7751
.................................................................................................................................................................... 412-232-7683
....................................................................................................................................................... EMER 412-232-8112
National Multiple Sclerosis Society, Allegheny
District Chapter...................................................................................................................................... 800-FIGHT MS
.................................................................................................................................................................... 412-261-6347
Pittsburgh Blind and Vision Rehabilitation Services.............................................................................. 800-706-5050
.................................................................................................................................................................... 412-682-5600
Sickle Cell Society, Inc................................................................................................................................ 412-371-0628
Spinal Cord Society (SCS)......................................................................................................................... 218-739-5252
(Medical records screened for improved treatments)
UPMC Health System............................................................................................................................... 412-647-UPMC
UPMC St. Margaret................................................................................................................................. 412-784-4000
....................................................................................................................................................... EMER 412-784-4200
The Western Pennsylvania Hospital......................................................................................................... 412-688-7706
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Dental Care
by David H. McKibben, DMD, MDS, and M.M. Nazif, DDS, MDS, Children’s Hospital of Pittsburgh
All children require early dental care to assure healthy teeth and gums. The dental problems of children with special needs are potentially the same as any child’s. The major differences stem more from the child’s limitations of independent function than from differences in growth.
The development of cavities and gum disease in some people and not in others is subject to the child’s resistance, diet, and hygiene. But infection is not the only problem that may arise in a child. As children grow, their genetic patterns may prevent normal eruption of teeth or an imbalance in the jaw and tooth size. These conditions may evolve into malocclusions (crooked teeth).
Teething
Probably the first dental problem a child will have is teething. The first teeth begin to erupt around the age of six months (exact time varies). Some children may be as old as one year before the teething process begins. Your pediatrician or pediatric dentist is a good source of advice with teething problems.
Professional Care
All children should be seen by a dental professional on a routine basis. The exact age to start regular dental visits varies with your child’s development and needs.
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Providers of Dental Care
Academy of Dentistry for the Handicapped.............................................................................................. 412-661-2222
Allegheny County Health Department Dental Clinics............................................................................ 412-687-2243
Lawrenceville Family Health Center Van, 3936 Butler Street, Pittsburgh, PA 15201,................. 412-578-8169
Hill House Association,1835 Center Ave., Pittsburgh, PA 15219,.................................................. 412-392-4441
Mt. Oliver Dental Clinic, 1630 Arlington Ave., Pittsburgh, PA 15210,............................................. 412-432-1620
Wander Building,339 Fifth Ave., McKeesport, PA 15132,................................................................ 412-664-8858
Achieva.......................................................................................................................................................... 412-995-5000
Children’s Hospital of Pittsburgh
Dental Services....................................................................................................................................... 412-771-6460
Focus on Renewal Sto-Rox Neighborhood Corporation....................................................................... 412-692-5440
University of Pittsburgh School of Dental Medicine, Center for Patients with Special Needs…..…412-648-3039
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Where To Find a Medical Advocate
Allegheny Children’s Initiative, Inc............................................................................................................ 412-431-8006
East Liberty Family Health Care Center, Inc............................................................................................ 412-661-2802
Family Resources........................................................................................................................................ 800-641-4546
.................................................................................................................................................................... 412-363-1702
Myasthenia Gravis Association of Western PA, Inc................................................................................ 412-566-1545
Ventilator Assisted Children/Home Program,
Children’s Hospital of Pittsburgh.......................................................................................................... 412-692-6494
................................................................................................................................................................... 412-692-6495
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How To Talk to Your Physician
Making the Most of Your Physician Appointments
Physicians are like the rest of us humans - some are more sensitive than others. Develop a positive relationship with your pediatrician because he or she can serve as a valuable resource for information, coping skills, and referrals to other sources.
It pays to write down questions for the physician between appointments so you have a reminder of your concerns when you get to the appointment. However, this is your time, and you need to be assertive in terms of your needs. If the physician doesn’t respond to your questions, ask them again. If you feel there is more that he or she could do to help you, then you need to let the physician know what you expect.
You may be referred to other physicians for consultations or on-going treatment. Try to find physicians you feel comfortable with and who take you seriously. Remember, you know your child best. If you are not happy with the service you are receiving, consider changing physicians.
Physician appointments can be stressful. If possible, plan to schedule only one per day, and leave a few days between appointments. Ask the person scheduling appointments when the least busy time is for the physician, and try to get an appointment during that time. This will minimize waiting. It also helps to get to know the physician’s nurse, who often can answer questions that come up after your appointment.
If you are concerned about a specific physician appointment, take a trusted friend along. It is difficult to listen when you are anxious, and four ears are sometimes better than two. You can check out your perceptions of what you heard with your friend or spouse. Document what you are told during the appointment.
If you have major concerns and your child is fussy during appointments, consider making a consultation appointment. This means you can sit down and talk to the physician alone, without your child present. Some physicians may do this free of charge. Ask the receptionist.
Sometimes you will find the advice you receive from one physician different from that of another. This can lead to confusion, but usually you can sort this out by using common sense. Trust your instincts!
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When To Call the Physician
Call the Physician When:
● Your child’s temperature is more than 101 degrees.
● Your child has vomiting and diarrhea for more than 24 hours.
● Your child is very lethargic (droopy, excessively sleepy, or not responding normally).
● Your child has any symptom you are unfamiliar with or unsure about. It is better to ask the physician than to
worry.
● You are going out of town. Ask the physician for a referral to another physician in the area you are visiting.
Be sure to refill whatever prescriptions you need.
● If your child has a heart or respiration monitor, be sure to inform your local fire, electric, and water
companies (see page 330 for more information).
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When Your Child is in the Hospital
Communicating with Hospital Staff
There are many different specialists on the health care team who will be talking with you about your child. Team members include: pediatricians, surgeons, other physicians who are specialists, and nurses. Others who may assist in caring for your child include social workers; physical, occupational and respiratory therapists; and nutritionists. In some hospitals, there is a Child Life Program that may help your child prepare for hospitalization, surgical and medical procedures, and plan individual and group activities to reduce stress and anxiety.
Caring for Your Child
If you are available to spend time in the hospital, your child may be more comfortable if you help with some of the care. Bathing, dressing, feeding, and play are examples of areas in which children may prefer to have their parents involved. It is important to let the nurse know how much you want to do and how much you feel comfortable doing. Here’s an example of what you might say: I’d like to give him his bath, but I won’t be in until 9 a.m. Can I do it then?
Medical Procedures
Some parents want to be involved in more technical procedures during the hospitalization. Medications, dressing changes, and line care are examples of skills that parents may need to learn in the hospital to do at home after discharge. The best way to learn is to:
● Watch the procedure
● Help with the procedure
● Do the procedure under supervision
● Do the procedure independently
Parents may feel they need more time to practice certain procedures. If you do not feel comfortable when you do the procedure independently, let the physician or nurse know that you need more opportunities for practice.
Leaving Your Child
Leaving your child for brief or extended periods of time is often difficult. While it is helpful to your child for you to stay with him or her, you will need time away - whether for a break, to go to work, or to check on things at home. Sometimes parents must be away for long periods of time. You may have already found ways to help your child feel secure during your absence. The following suggestions have helped other children and parents, and may be helpful for you.
● Always tell your child when you are leaving. Sometimes parents want to slip away unnoticed. They want
to avoid upsetting their child. However, children actually become very upset when they realize their
parents have left without telling them. Children feel safer and more secure when they know what to
expect - even when they don’t like it.
● If another member of your family isn’t available, check to see if there is a specialist, nurse, or volunteer
who may be able to stay awhile with your child when you need to leave. If you let the staff know ahead of
time that you will be leaving, it helps them to make arrangements.
● Provide your child with personal items and reminders of you that can give comfort and reassurance while
you are away. Maybe you can leave a picture of yourself, or you might leave a personal belonging of
yours such as a sweater or an article from your purse or pocket that your child can keep and hold until
you return.
● If a phone is available, you can arrange to call at set times or to have your child call you so that he or she
can look forward to telephone conversations with you. Younger children will understand time better if you
refer to specific activities rather than hours. You might say, I’ll call you after lunch.
● If you know when you’ll be returning to the hospital, tell the staff so that they can help your child to
remember when you are coming back. Again, it is helpful to refer to specific activities. You might say, I’ll
be back before you go to sleep.
Caring for Yourself
It is very difficult having a sick child. It is stressful spending long hours in the hospital away from home and family. Having to take off from work creates additional problems. A letter from your physician or social worker may make your employer more understanding - be sure to ask for one if you think it will help. It also is stressful if you cannot spend as much time with your child as you would like. Often parents are so concerned about their child, that they forget the effect of illness and hospitalization on themselves.
Parents need support, and sometimes it is necessary to ask for help. Other family members may be able to help with transportation, babysitting at home, or meal preparation. Family members may help by visiting your child if you are unavailable or if you need to take a break.
Other supports in the hospital include the social worker or a child life worker. Some hospitals have formal parent support groups. Many parents find it useful to seek out other parents in hallways or lounges to discuss common problems and concerns. A nurse may be able to identify another parent who is interested in mutual support.
Take care of yourself so you can take care of your child. Let staff members know how they can help.
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Where To Learn Cardio-Pulmonary Resuscitation (CPR)
Keep a copy of how to do CPR in an easily accessible location. Consider taking a CPR course. Even though you’re busy, taking the extra time could save a child’s life. Your local Emergency Medical Service (EMS), various agencies, and most hospital education departments offer CPR courses, including the following:
The American Red Cross............................................................................................................................ 412-263-3158
Children’s Hospital of Pittsburgh,
Community Education Program............................................................................................................ 412-692-7105
Highmark Blue Cross Blue Shield
Health Education Center, Inc................................................................................................................ 412-544-7000
Magee-Womens Hospital............................................................................................................................ 412-641-1000
The Children's Home of Pittsburgh/Transitional Infant Care Hospital................................................. 412-441-0700
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What Families Should Know About Home Medical Equipment and Rehab Technology Services
By Dan Shields, Operations Manager, Rehab Dimensions, Inc.
Home Health Care is a nebulous term encompassing home nursing, home infusion, home medical equipment and supplies, and home physical, occupational, and speech therapies. Providers of medical equipment for use at home may be listed in the yellow pages under several categories, such as home health care, hospital equipment, and medical equipment.
Home Medical Equipment
Home medical equipment includes a vast array of items commonly used in hospitals or other health care facilities, ranging from hospital beds, oxygen and respiratory products, walking aids, and wheelchairs to IVs and bathroom products.
The Referral Process
Sometimes before a child is discharged from a hospital or health care facility (or even during a visit to the physician’s office), a physician or medical professional will determine that the child will need medical equipment.
As part of the discharge plan, a team of health care workers - which may include a physician, nurse, social worker, or therapist (respiratory, physical, occupational, or speech) - determines what equipment may be needed for use in the home, at school, or at work.
Medical equipment companies direct their marketing efforts toward establishing relationships with these referral sources and toward the insurance companies, who are the primary payers of the services.
It is important to remember that by law the consumer has the right to choose the provider of medical equipment and service. The primary limitation to this law is that insurers may not cover some or any of the cost if the equipment is supplied by an out-of-network provider. Barring this exclusion, the consumer has the right to choose.
This is important for families to know because many hospitals own their own medical equipment companies and may try to direct you to their own company. Some companies do not bill all insurers or require up-front payment for all services, while others may bill the insurer first and collect the balance from the client. It is illegal to automatically waive the patient pay portion of a bill.
General Selection Criteria for Home Medical Equipment:
● Insurance
Does the company bill your insurance, or does it bill you and expect you to submit a claim to your
insurance? If you have an HMO, PPO, or other managed care plan, is the plan on the provider list?
● Accreditation by JCAHO
The Joint Commission on Accreditation of Healthcare Organizations is the medical industry’s Stamp of
Quality. JCAHO establishes national benchmarks for performance of healthcare providers. Being
accredited by JCAHO indicates that the supplier has met the standards. A special recognition is awarded
to suppliers with exceptional compliance: Accredited with Commendation, which is similar to receiving an
A+ on one’s report card.
● Professional Staff
Companies should employ clinical professionals who thoroughly understand the equipment and how to
use it. This is necessary for the company to provide adequate instructions on the use, care, maintenance,
and troubleshooting of the equipment.
For example, if oxygen or respiratory products are provided, a respiratory therapist should be employed; if
infusion is provided, a nurse should be available; if special wheelchairs are provided, a rehab technology
specialist should be employed.
● Service and Repair
Companies should be able to maintain and repair the equipment provided. Adequate replacement and
rental equipment should be available if the provided equipment fails. Hours of service should be flexible
enough to provide service when the consumer needs it.
Rehab Technology Services
Rehab Technology is a special type of Home Medical Equipment (HME). Rehab Technology is defined by the Rehab Section of the National Association of Medical Equipment Suppliers (NAMES) as the application of enabling technology systems designed to meet the needs of a specific person experiencing any permanent or long-term loss or abnormality of physical or anatomical structure or function.
These services, prescribed by a physician, primarily address wheeled mobility, seating and alternative positioning, ambulation in support and equipment, environmental controls, and other equipment and services that assist the individual in performing daily living activities. Rehabilitation technology services facilitate and/or enhance one’s access and independence, thereby improving a person’s quality of life.
Rehab Technology services are supplied by a rehab technology specialist (RTS) working for a Rehab Technology Company (RTC). The process of providing Rehabilitation Technology includes, at a minimum, that the RTS will work closely with other allied health professionals to complete a comprehensive evaluation of the consumer’s needs and requirements; will specify and select appropriate technology products; will assemble, fit, adjust, and deliver the selected technology to the consumer; and will provide all necessary short- and long-term followup, training, re-evaluation, re-adjustments, and service.
Keys to Evaluating a Rehab Technology Company
A consumer should consider a number of factors in rating the providers of this specialized home medical equipment:
● Credentialed Staff
Some suppliers have specialized staff who perform Rehab Tech Services, such as physical or
occupational therapists, or therapy assistants. Some have medical equipment specialists who by training
have specialized in Rehab Technology. These individuals may be registered with the National Registry
of Rehab Technology Suppliers (NRRTS) or may be certified as Assistive Technology Specialists (ATS).
Beware of HME’s who say they do rehab but have no credentialed staff — and who do not do rehab as a
primary service.
● Direct Providers or Subcontracting
Some HME companies do not provide a Rehab Technology specialist themselves but subcontract with
another company to provide this service. Although the product may be good, this process adds another
layer to the communications and may result in some billing difficulties.
● Repairs and Service
Be sure that the company who provides your equipment is qualified to service and repair it. Some
companies only sell the equipment but have no (or only a very small) service and repair department.
● Home Evaluation and Delivery
A client’s need for rehab technology is often evaluated at a rehab hospital. However, what may fit and
work well for a client in the hospital may not fit through his or her door at home. Select a provider who has
the ability to evaluate a client in the home or work site and who will modify or adjust equipment to
accommodate the home environment.
● Custom Equipment
Clients using rehab technology frequently need specialized features that are not commonly available.
Rehab Technology suppliers should be capable of creating customized equipment by modifying existing
equipment or constructing new equipment from a combination of commercially available products and/or
custom-created products.
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Providers of Medical Equipment and Rehab Technology
Allegheny County Department of Human Services................................................................................ 412-350-5706
Office of Mental Retardation/Developmental Disabilities................................................................. 412-350-3695
(Adaptive equipment)
American Lung Association of Western PA............................................................................................. 800-220-1990
(Free loan of respiratory equipment).................................................................................................... 714-772-1750
Arthritis Foundation, Western PA Chapter............................................................................................... 800-522-9900
(Adaptive devices)................................................................................................................................... 412-566-1645
Automated Health Systems, Inc................................................................................................................. 800-543-7633
(Free eyeglasses, hearing aids, orthodontic braces)......................................................................... 724-543-7633
Blindness and Visual Services Bureau.................................................................................................... 412-565-5240
(Adaptive aids and devices)
Bower Hill Braillists Foundation...................................................................................................... Write for information
(Non-technical braille and large-type books, course materials)
Canine Companions for Independence.................................................................................................... 412-431-5087
(Provides trained dogs for assisted service, hearing, and facility)
The Carnegie Library of Pittsburgh............................................................................................................ 412-622-3144
Library for the Blind/Physically Handicapped..................................................................................... 800-242-0586
(Cassette books, disc books/magazines, large print books, described videos)............................ 412-687-2440
The Children’s Institute................................................................................................................................ 412-420-2400
(Assistive technology evaluations)
Community College of Allegheny County (CCAC)................................................................................. 412-237-4612
(Talking calculators, tape recorders, braillers, closed-circuit TV..................................................... 412-237-4614
enlarger, computers with adaptive equipment and voice, TDD,
and low-hearing devices)
D.T. Watson Rehabilitation Services........................................................................................................ 412-749-2284
(Specialized/adaptive equipment)
HEAR NOW.................................................................................................................................................. 303-695-7797
(Hearing aids and cochlear implants)
Multiple Sclerosis Service Society............................................................................................................ 800-542-2413
(Lends assistive equipment).................................................................................................................. 412-469-7240
National Kidney Foundation of Western PA............................................................................................ 412-261-4115
(Free medical alert jewelry)
National Multiple Sclerosis Society,
Allegheny District Chapter................................................................................................................... 800-FIGHT MS
.................................................................................................................................................................... 412-261-6347
PA Telecommunications Relay Services AT&T/TRS............................................................................ 800-654-5988
Pittsburgh Blind and Vision Rehabilitation Services.............................................................................. 800-706-5050
(Products for blindness, vision aids, training, talking books,............................................................ 412-682-5600
adaptive aids, and appliances services)
Radio Information Service (RIS)................................................................................................................ 412-488-3988
(Loans special radios)
Scleroderma Agency of Western PA......................................................................................................... 412-681-3650
(Recycles medical equipment)
Sewickley Valley Hospital.......................................................................................................................... 412-741-6600
Staunton Clinic........................................................................................................................................ 412-749-7330
(Adaptive equipment)................................................................................................................. EMER 412-741-6600
South Hills Health System.......................................................................................................................... 800-368-4663
(Medical equipment)............................................................................................................................... 412-469-7171
Three Rivers Center for Independent Living............................................................................................ 800-633-4588
................................................................................................................................................................... 412-371-7700
.......................................................................................................................................................... TDD 412-371-6230
UPMC Health System............................................................................................................................... 412-647-UPMC
Center for Assistive Technology........................................................................................................... 412-647-1210
Variety Club of Pittsburgh........................................................................................................................... 412-747-2680
(Mobility equipment)
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Where To Find More Information About Medical Equipment and Rehab Technology
Augmentative Communication Consultants, Inc........................................................................ (ACCI) 412-264-6121
Represents more than a dozen manufacturers of augmentative communication and other assistive
technologies, such as adaptive toys, adaptive computer interfaces, and environmental controls. Also
offers educational software and vocational training supplies.
E-mail: acci@usaor.net
Website: www.ACCIinc.com
Disability Product Postcards...................................................................................................................... 215-675-9133
Offers a free quarterly product guide showing products for people with disabilities from respected
manufacturers.
E-mail: Jlcomm@aol.com
Website: www.blud.com/dpp
Jesana Ltd., A Very Special Catalog......................................................................................................... 800-433-4728
Catalog has a full range of products for children with physical and/or developmental disabilities.
Best 25 Catalog Resources for Making Life Easier................................................................................ 608-274-4380
Guide to locating thousands of useful and hard-to-find adaptive devices.
Dayspring Associates, Inc........................................................................................................................... 301-939-5900
Provides a directory of 1,000 rehabilitation aids.
J.A. Preston................................................................................................................................................... 800-631-7277
Offers a complete line of products for children and adults that
assist with positioning and other physical disabilities.
American Discount Medical........................................................................................................................ 800-877-9100
Discounts many major brand medical products.
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Funding Sources for Medical Equipment
The first stop for funding medical equipment for your child is your primary insurance coverer. If you still need more assistance, there are numerous agencies that also can help. Finding the right funding source takes research. The following sources will get you started.
Funding Devices and Services in Augmentative and Alternative Communication............................ 800-642-8255
Prentke Romich Company, 1022 Heyl Rd.,........................................................................................ 216-262-1984
Wooster, OH 44691
Free one-page flyer listing organizations and tips for approaching them.
The Many Faces of Funding, by Anna Hoffman...................................................................................... 415-383-4000
Phonic Ear, Inc., 250 Camino Alto, Mill Valley, CA 94941
Information pertains mostly to physically disabled and non-speaking people.
The Sloane Report....................................................................................................................................... 305-251-2199
P.O. Box 561689, Miami, Fl 33256
List of corporate funding sources available. Six bi-monthly issues.
Closing the Gap............................................................................................................................................ 612-248-3294
Information on microcomputer applications for people with disabilities.
EASI: Equal Access to Software and Information................................................................................... 714-830-0301
Information on adaptive technology and information access.................................................. TDD 310-206-5155
for people with disabilities.
E-mail: easi@educom
HEATH Resource Center........................................................................................................................... 800-544-3284
Information about disability issues in postsecondary education...................................................... 202-939-9320
E-mail: TT.heath@ace.nche.edu
RESNA.......................................................................................................................................................... 702-524-6686
Interdisciplinary society for the advancement of rehabilitation through technology. Has list of Tech Act
programs in each state.
E-mail: kmoore@capcon.net
TRACE Research and Development Center........................................................................................... 608-262-6966
Information on technology that meets communication and..................................................... TDD 608-263-5408
environmental control needs of people with severe disabilities, and on adaptive software and hardware.
E-mail: essers@macc.wisc.edu
(Source: EASI, published by HEATH under Cooperative Agreement No. H03OC-3002-94, awarded to the American Council on Education.)
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Source: Information for this section came from various sources, including the Allegheny County Health Department; Children's Hospital of Pittsburgh; The Family Resource Binder, Disabilities Action Forum, Marin County, Office of Education, San Rafael, CA; and Project CHAMP, UCLA, as printed in The Family Resource Binder, Disabilities Action Forum, Marin County Office of Education, San Rafael, CA