Family Handbook

HANDBOOK A Guide To Your Child’s Stay at The Pediatric Specialty Hospital at The Children’s Home of Pittsburgh & Lemieux Family Center

The Children’s Home of Pittsburgh was established in 1893 as an independent, nonprofit licensed organization.

Our purpose is to promote the health and well-being of infants and children through services that establish and strengthen the family.

Dear Parents, Welcome to The Children’s Home of Pittsburgh & Lemieux Family Center. We are so pleased that you have chosen to bring your child here as the next step on his or her health journey. We understand that this is a difficult time for you, but rest assured, from the moment your child is admitted, you and the entire staff will work together to prepare for your child’s safe discharge.

Your child’s health and the well-being of your family is at the heart of everything we do. We will do all we can to make things easier for you, to make you feel comfortable, to reassure you, and to guide you in the care of your child so you can make the transition to home.

The first thing you’ll notice about The Children’s Home is that we aren’t like other hospitals. Our Pediatric Specialty Hospital provides family-centered care in a calm, relaxed, and home-like atmosphere. Here you can become comfortable learning to care for your child at your own pace.

During your child’s hospital stay with us, your family—including your other children of any age—can be together here and even stay overnight. This unique setting allows us to give your child the best possible care and focus on the needs of your whole family. All services, including family overnight stays, are covered by insurance or provided free by The Children’s Home.

When families and staff work closely together, everyone benefits. So while your child is with us, please ask questions, voice your concerns, and let us know what you and your child need. We want to hear your thoughts and ideas. This helps us to grow and give the best possible care to your child, as well as other children and their families.

Sincerely, The Staff of The Children’s Home of Pittsburgh & Lemieux Family Center

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T A B L E

O F

C O N T E N T S

What’s inside?

This Family Handbook serves two useful purposes: To provide you with information about The Children’s Home of Pittsburgh & Lemieux Family Center, as well as the guidelines and rules that everyone—families, visitors, and staff—must follow in order to maintain our calm, relaxed, and home-like atmosphere To use as a tool to help you stay organized and take an active role in your child’s care

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PAGE 5

Section 1: General Information BUILDING ACCESS AND SAFETY VISITOR IDENTIFICATION PARKING RESTROOMS CALLING THE CHILDREN’S HOME TELEPHONE SYSTEM CELL PHONE USE INTERNET/WIFI VISITOR GUIDELINES, RESPONSIBILITIES, AND CONDUCT

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Section 3: Your Child’s Healthcare Team DOCTORS NURSE PRACTITIONERS STAFF NURSES CHILD DEVELOPMENT SPECIALIST SOCIAL WORKER DISCHARGE CASE MANAGER OTHER STAFF MEMBERS AT THE CHILDREN’S HOME PAGE 29

SMOKING POLICY AND RULES

Section 4: Nesting

HAND WASHING

OVERVIEW

PAGE 43

Section 6: Patient and Caregiver Rights PATIENTS’ BILL OF RIGHTS COMPLAINTS AND GRIEVANCES PAGE 49

Section 7: Child’s Way® WHAT IS CHILD’S WAY? FREQUENTLY ASKED QUESTIONS REFERRALS AND ADMISSIONS

NESTING IN BLUE AND YELLOW UNITS PAGE 13

Section 2: Page 13 Pediatric Specialty Hospital Features

NESTING IN THE LEMIEUX FAMILY CENTER GUIDELINES AND RULES FOR NESTING PAGE 37

OVERVIEW

Section 5: Lemieux Family Center

HANDS-ON, FAMILY-CENTERED CARE

PRIVATE BEDROOMS

NESTING

KITCHENS

PLAYROOMS

DINING/LIVING AREAS

PATIENT CARE VOLUNTEER PROGRAM

AUSTIN’S PLAYROOM

BOUTIQUE

LAUNDRY

OUTDOOR SPACES

ENTERTAINMENT AND COMMUNICATIONS

DISCHARGE PLANNING

TELEPHONE SYSTEM 3

“This was exactly what we needed—only wish we had come sooner! The nurses were all outstanding. More than being very competent, they had kind hearts! The other staff were friendly and helpful as well.

The clean, calm atmosphere was so helpful.”

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General Information

Section 1: General Information BUILDING ACCESS AND SAFETY VISITOR IDENTIFICATION PARKING RESTROOMS CALLING THE CHLIDREN’S HOME TELEPHONE SYSTEM CELL PHONE USE INTERNET/WIFI VISITOR GUIDELINES, RESPONSIBILITIES, AND CONDUCT SMOKING POLICY AND RULES HAND WASHING

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In this section of the Handbook, you will find important information you need to know about being at The Children’s Home.

Please read the section carefully and share the information with other family members and friends who come to visit your child.

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Section 1:

General Information BUILDING ACCESS AND SAFETY Entering the building: The Children’s Home can be entered through either the front or back doors. Ring the doorbell and the receptionist will answer between the hours of 8:00 am and 4:00 pm. Before and after this time, one of the two security guards on duty will answer the bell.

Security: Safety at The Children’s Home is always a top priority. We have security 24 hours per day, 7 days per week.

We ask everyone to take these special precautions while they are in or around the building: • A security guard will walk with you to your car any time of night or day that you would like an escort. Just let one of the guards or nurses know when you are ready to leave.

• Before you leave the building to smoke, please inform the receptionist or security guard. Never try to prop open the automatic sliding doors or allow anyone to come in the building with you when you re-enter.

• NEVER leave any child alone in your bedroom, any common area, or Austin’s Playroom. Please do not ask another parent or visitor to be responsible for your child and watch him or her, even for just a minute. Call the hospital unit if you need help or need to take a break. We are always here for you.

• If there is ever a time when you feel unsafe for any reason, be sure to let your child’s nurse, the charge nurse, or security know right away.

Fire alarm: If the fire alarm goes off and you are located in the Lemieux Family Center, you must evacuate to the next nearest zone. Please look at the evacuation plan that’s hanging on the wall in the Lemieux Family Center so that you will know your evacuation route in case of fire. If you are located on the 3rd floor, please report back to the unit.

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VISITOR IDENTIFICATION We are very careful about knowing who is in the building at all times. Everyone must: • Show an ID at the reception area on the main level.

• Sign in and out of the building when arriving and leaving.

• Wear a blue parent badge or a white guest badge.

At the time your child is admitted to The Children’s Home, you will be given an orange arm band by your admitting nurse or social worker. When you are wearing your orange arm band, you do not need to show ID at the reception desk when you enter the building. However, you still need to sign in and out and update your blue parent badge each day.

PARKING Parking at The Children’s Home is free. For a short visit, you may use the parking lot in front of the building. If you will be staying overnight (nesting) or visiting for several hours, please use the parking lot at the back of the building and enter through the back door. If you park in the back parking lot, you will be given a hang tag for your car when you check in at the front desk.

If you cannot find a parking place, let the receptionist or security know. You may ask for an escort to or from your car at any time of the day or night.

RESTROOMS Public restrooms are conveniently located in the following areas: • On the 1st floor in the main hall to the right of the reception desk • On the 2nd floor just outside the Lemieux Family Center • On the 3rd floor just outside the Green Unit 8

CALLING THE CHILDREN’S HOME The direct phone number to the Pediatric Specialty Hospital is 412-441-0700 (or toll-free 800-595-3440). From 8:00 am to 4:00 pm, the receptionist answers the phone for The Children’s Home of Pittsburgh & Lemieux Family Center and will transfer your call to your child’s unit. From 4:00 pm to 8:00 am, and on weekends and holidays, the phone will ring directly into the unit.

Nurses also carry handheld phones. You are welcome to ask for the direct number to call your child’s nurse.

TELEPHONE SYSTEM If you are inside The Children’s Home and want to call a location within the building, dial its 4-digit extension number  Calling an outside number: You must press 9 and then dial the phone number. For example, 9-412-555-1234.

CELL PHONE USE Parents may receive phone calls in the hospital unit and in the Lemieux Family Center. However, out of respect for others, we ask that your calls be brief and quiet. All cell phones should be kept on vibrate only setting.

LOCATION

EXTENSION

GREEN UNIT

3030 or 3033

PURPLE UNIT

3051 or 3054

BLUE UNIT

2068

YELLOW UNIT 3048 CHARGE NURSE

7981

FRONT DESK

1049

(Security will answer from 4:00 pm - 8:00 am)

INTERNET / WIFI We offer free Internet/WiFi connection throughout the building. To access the network, use the following: Network: CHome Visitor Password: guest 9

VISITOR GUIDELINES, RESPONSIBILITIES, AND CONDUCT Visitors: You may visit your child any time day or night. Your child may be visited by any age sibling or child that lives in their household. For each visiting child, a health screening form must be completed and reviewed with the family on a weekly basis when the child visits. Only siblings or children that live in the household are permitted to visit in order to limit your child’s exposure to the many contagious childhood diseases, colds, or viruses that are often found in the community.

Other children under the age of 12 are not allowed to visit, unless they have been pre-approved by the Clinical Director or his/her designee. We welcome friends and family who want to visit. With your permission, they may visit your child when you are not here. Just give us their names so we can put them on your visitor list.

Feeling sick? NO ONE, including parents and siblings, should visit The Children’s Home if they show any sign of being sick with a cold, flu, or other active infection that could be passed on to the children staying here.

Visitor responsibilities and conduct: Our goal is to make The Children’s Home as calm, relaxed, and home-like as possible. Please help us keep it that way. Everyone (including parents, siblings, families, guests, and staff) should follow a few simple Children’s Home rules based on safety and respect for others: • DO NOT VISIT if you show signs of any active infection (cold, flu, sore throat, cough, fever, etc.) that could be passed on to the children at The Children’s Home • Quiet time is from 10:00 pm to 7:00 am. During these hours, please do not use the kitchen/common area, and keep all TVs, radios, and conversations at a low volume • Families and visitors must clean up after themselves in the kitchen/living areas and Austin’s Playroom. All visitors and families are permitted to use the kitchen/living areas regardless if they are staying in the Lemieux Family Center • Families and visitors may eat in the hospital rooms but should be mindful of any restrictions to the patient’s diet.

You must clean up after yourself if you eat in your child’s room 10

When in the building or on the grounds of The Children’s Home: NO YELLING, SWEARING, DESTRUCTIVE BEHAVIOR, OR VIOLENCE NO VERBAL OR PHYSICAL FIGHTING NO WEAPONS OF ANY KIND NO DRUGS, ALCOHOL, OR INTOXICATION OF ANY KIND NO LOUD OR HOSTILE TONES OF VOICE NO RUDE, PROFANE, RACIST, OR CULTURALLY OFFENSIVE REMARKS NO POSSESSION OF ALCOHOL OR ILLEGAL DRUGS OR BEHAVIOR THAT INDICATES ALCOHOL OR DRUG USE If a family member or visitor acts in any of these inappropriate or illegal ways, he or she will be asked to leave The Children’s Home and may not be allowed to return.

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SMOKING POLICY AND RULES The Children’s Home and all of its property is a smoke-free zone, including vapes and electric cigarettes. The ONLY place that smoking is permitted is in the smoking shelter at the rear of the parking lot. Smoking is never allowed near the building, in the playground area, in the gazebo, or along the walkway through the garden.

You must let the receptionist or security guard know that you are leaving the building to smoke. Never prop a door open when you leave the building.

If you smoke, please wear a smoking shirt or jacket that you can remove before you handle your child, and be sure to wash your hands thoroughly after you smoke.

HAND WASHING One of the best ways to keep germs away from your child (and all of the children here) is by washing your hands frequently. Here are the times when ALL people inside The Children’s Home should wash their hands and arms: • When you first arrive at your child’s unit • Every time you leave and return to the unit • After touching soiled diapers, clothing or bed linens • After touching your mouth or nose

For the sake of the children, please be thoughtful and wash, wash, wash!

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Pediatric Specialty Hospital Features

Section 2: Pediatric Specialty Hospital Features OVERVIEW HANDS-ON, FAMILY-CENTERED CARE NESTING PLAYROOMS PATIENT CARE VOLUNTEER PROGRAM BOUTIQUE OUTDOOR SPACES DISCHARGE PLANNING 13

This section of the Handbook gives you helpful information about the Pediatric Specialty Hospital and its features.

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Section 2:

Pediatric Specialty Hospital Features OVERVIEW There are four hospital units that make up the Pediatric Specialty Hospital at The Children’s Home. Your child will be assigned to a unit based on availability at the time of admission, as well as his or her medical needs. Each unit is named by a color. The purple, green, and yellow units are located on the 3rd floor. The blue unit is on the 2nd floor.

Hands-on, family-centered care: Each hospital unit is staffed with 1 nurse for every 3-4 children, allowing the nursing staff time to educate you with hands-on training, while providing high-quality medical care to your child. Our goal is to help you become a confident caregiver to your child before you transition to home. We strongly encourage you to take an active role in your child’s care, knowing that the nurses are there to guide and support you.

The name of my Unit

The phone number in my room 15

NESTING Families (parents and siblings) have the option of staying overnight at The Children’s Home. We call this nesting.

We offer nesting at the bedside in some of our patient rooms, or your family can stay overnight in one of the nesting rooms in the Lemieux Family Center, located on the 2nd floor of The Children’s Home. (See Section 4 and 5 in this Handbook for more detailed information).

PLAYROOMS There is a playroom located close to each hospital unit where children and families can spend time together in a comfortable and fun setting. If a parent can’t always be there, the staff can take the child to a playroom so they have a safe environment to play. Play areas have comfortable seating, a TV, an Xbox, books, games, videos, a computer, and toys. In addition, Austin’s Playroom is located in the Lemieux Family Center.

PATIENT CARE VOLUNTEER PROGRAM Many of the infants who come to The Children’s Home have spent an extended period of time in a hospital, often in the Neonatal Intensive Care Unit (NICU). When they are transferred to The Children’s Home, we want to make sure they receive lots of sensitive and positive nurturing. To help us make sure this happens, we created the Patient Care Volunteer Program.

Research shows that touch greatly helps infants in all areas of their development. Our Patient Care Volunteers give their time to simply come in and hold and rock babies. With your permission, your baby can be part of the Patient Care Volunteer Program. If you cannot be here, a volunteer may cuddle your baby, no matter if your baby is asleep, awake or fussy. Your baby will be well cared for by the nursing staff and given plenty of attention from our Patient Care Volunteers.

Every volunteer goes through an orientation program and a health screening. Also, every volunteer must pass a number of security clearances, as well as confidentiality training.

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Patient Care Volunteers do not provide any care to a child under any circumstances. A nurse is always close by if the child needs medical attention or if the volunteer needs to stand up for any reason. For safety purposes, volunteers are always seated, never standing or walking, when holding babies. We also have Patient Care Volunteers who are trained to play with older children and often will come in and play games, read stories, or do arts and crafts with the child.

BOUTIQUE Thanks to generous donations, we have a boutique with new and gently used clothing, toys, and baby gear, as well as diapers and formula. If your child needs any of these items while he or she is at The Children’s Home, you and your social worker may visit the boutique together.

OUTDOOR SPACES Our outdoor spaces include a walking path, grassy area and gardens, play castle and an accessible jungle gym, swings, and slide. Outdoor spaces may be used by patients, siblings, and children who are in daycare at Child’s Way. If you would like to take your child outside please ask your child’s nurse. Your child must be cleared to go outside by the medical team.

DISCHARGE PLANNING From the time of your child’s admission, your Discharge Case Manager will work with you to plan for discharge. During your stay, the entire staff will help you learn and understand your child’s needs so you will be a confident caregiver by the time your child goes home. Working together, you and the medical team will: 1. Figure out your learning style

2. Set up an individual teaching plan that’s right for you

Before your child’s discharge, there may be a family meeting. During the meeting, members of the medical, nursing, and case management teams will answer all of your questions and address any concerns you may have. We ask that you arrive by 10 am on the day of discharge so we can assure a timely discharge to home for you and your child.

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“When we arrived at The Children’s Home, the staff was amazing and still are on our discharge date. Everyone goes out of their way to make you feel at home and comfortable and it’s all genuine. They took care of not only my child, but also me and my family. They accommodated us in every way, shape and form. Thank you for caring for us in our time of need with a newborn needing to be in a medical setting.

This is by far a phenomenal place with great people.”

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Your Child’s Healthcare Team

Section 3: Your Child’s Healthcare Team DOCTORS NURSE PRACTITIONERS STAFF NURSES CHILD DEVELOPMENT SPECIALIST SOCIAL WORKER DISCHARGE CASE MANAGER OTHER STAFF MEMBERS AT THE CHILDREN’S HOME 19

In this section you will find descriptions of the different members of your child’s healthcare team during his or her stay at The Children’s Home. Your child may also be seen by a healthcare professional that is not included in this list.

If you have any questions about who’s on the healthcare team or who’s the best person to go to for a particular need, please let us know. We want you to feel comfortable working with the team and knowing what to expect.

No one knows your child better than you do. Think of yourself as the captain of your child’s healthcare team and be an active participant in your child’s care. Ask questions, learn all you can, and voice your concerns or fears. The more the healthcare team knows, the better able they are to meet the needs of your child, you, and your whole family.

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Section 3:

Members of Your Child’s Healthcare Team DOCTORS The same doctors who took care of your child at the hospital you transferred from will oversee the care of your child at The Children’s Home during daily rounds. This means that your transition from the referring hospital will be smooth and seamless.

Doctors who make daily rounds here include: • Pediatricians • Neonatologists (doctors who specialize in caring for newborn babies)

• Pulmonologists (lung doctors) • Endocrinologists (diabetes doctors)

Other specialists who are available at The Children’s Home include: • Pediatric Surgeons • Transplant Doctors • Ophthalmologists (Eye Doctors)

• Audiologists (Hearing Specialists) • Cardiologists (Heart Doctors) • Other specialists your child may need to see

Use the space below to write the names of your child’s DOCTORS:

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NURSE PRACTITIONERS Nurse Practitioners perform many of the same duties as doctors. They are licensed, certified healthcare professionals who have received high levels of education. All Nurse Practitioners have completed a master’s or doctoral degree program, and they have training beyond their registered nursing degree program.

Under the supervision of a licensed physician, a Nurse Practitioner in Pennsylvania can: • Order and perform diagnostic tests • Diagnose health conditions and treat patients • Manage patients’ overall care • Counsel and educate patients and their families At the Pediatric Specialty Hospital, our Nurse Practitioners work closely on a daily basis with your child’s doctors.

Your child’s Nurse Practitioners will focus on your child’s overall health and wellness. They will act as the link (liaison) between you and your child’s doctors. Your Nurse Practitioners are available day and night to answer any of your questions.

Use the space below to write the names of your child’s

NURSE PRACTITIONERS:

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STAFF NURSES Our Nurse Practitioners and Registered Nurses have many years of experience taking care of infants and children.

Because of our unique care setting, the staff nurses really get to know you and your child. And you’ll get to know the nurses well, too. They are dedicated to meeting the needs of your child and family 24-hours a day, 7-days a week.

They will support you, answer your questions, and offer help and advice.

You and your child will be assigned a nurse for every shift. Your nurses will be your advocates and teachers, and will coordinate your child’s care. They will attend to all of your child’s daily needs. You will work closely with your nurses to make a care plan for your child. Most importantly, they will help you learn everything you need to know and do (including lots of “hands-on” practice) in order to care for your child on your own with confidence.

The Pediatric Specialty Hospital partners with several nursing schools. So when you are here, you may see nursing students working with our nurses as part of their pediatric training.

Use the space below to write the names of your child’s

NURSES:

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CHILD DEVELOPMENT SPECIALIST A Child Development Specialist will focus on the developmental needs of your child. They will work with your child to determine his or her current physical, mental, and emotional development. With this information, they will create a developmental care plan that will help your child grow and progress based on his or her medical situation.

During the time your child is with us, your Child Development Specialist will: • Provide your child with therapy as needed • Carefully follow your child’s progress • Work with you to make sure your child’s environment here and at home will nurture his or her development • Offer to teach you infant massage • Assist with ordering and delivery of any needed adaptive equipment, such as KidKarts • Arrange for a teacher to work with school-aged children as needed • Be a key member of the team that plans for your child’s discharge to home

Use the space below to write the name of your child’s

CHILD DEVELOPMENT SPECIALIST:

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SOCIAL WORKER Your Social Worker at The Children’s Home is your go-to person for practical, emotional, and social support during your child’s stay with us. Your child’s hospitalization can be stressful for the entire family. It is normal for people to need support during this time. Your Social Worker is experienced at helping families like yours navigate through the challenges of a hospital stay and discharge to home with a medically fragile child.

You and your Social Worker will work together to figure out what your family needs to make sure the transition to home is smooth and safe. Based on your family’s individual needs, your Social Worker can help you connect with community resources, such as: • Parenting programs/support groups • Material assistance, such as baby items, WIC, food stamps, transportation assistance programs, etc.

• Mental health counseling • Child care for your medically fragile child if needed (See Section 7 in this Handbook for more detailed information)

Use the space below to write the name of your child’s

SOCIAL WORKER:

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DISCHARGE CASE MANAGER Your Discharge Case Manager will coordinate all of your discharge needs. You, your Social Worker, your Child Development Specialist, and other medical staff will work closely together to create a detailed discharge plan.

The goal of the discharge plan is to make your transition to home as easy as possible.

Your discharge plan may include any or all of these things: • Creating a list of doctors’ appointments with dates and phone numbers • Making sure you have all needed medicines and medical supplies • Setting up medical therapy for your child • Scheduling home care nursing • Arrange for any medical equipment your child will need at home, such as a wheel chair or oxygen • Putting together a support system of professionals, family, and friends to help meet your family’s needs • Planning for anything else that may be right for your child and family Use the space below to write the name of your child’s

DISCHARGE CASE MANAGER:

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OTHER STAFF MEMBERS AT THE CHILDREN’S HOME Your child may also receive services from Physical Therapists, Occupational Therapists, Speech Therapists, and Dieticians while at The Children’s Home. It takes a lot of people to keep our family-centered, home-like facility running and to meet the needs of the children and families who utilize the Pediatric Specialty Hospital. All of us—from the CEO, Clinical Director, and other administrators to our dedicated nurses, therapy staff, patient care technicians, service aides, housekeepers, and maintenance workers—have the same mission.

We are committed to doing all we can for the health and well-being of your child and to offer services that strengthen your family.

Use the space below to write the names of

OTHER STAFF MEMBERS you would like to remember:

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“Everything at The Children’s Home exceeded our expectations.

We were welcomed in with open arms and treated like family from the first day. The nurses were very helpful and willing to teach us so we were comfortable with going home.”

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Nesting

Section 4: Nesting OVERVIEW NESTING IN BLUE AND YELLOW UNITS NESTING IN THE LEMIEUX FAMILY CENTER GUIDELINES AND RULES FOR NESTING 29

When you stay overnight with us at The Children’s Home, we call it nesting.

We want you to feel comfortable, safe, and relaxed in a place where you can care for, nurture, and spend time with your child.

If you will be nesting, please read this section carefully. It gives you important information and outlines the guidelines and rules you need to know.

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Section 4:

Nesting at The Children’s Home of Pittsburgh OVERVIEW Our mission at The Children’s Home of Pittsburgh & Lemieux Family Center is to do all we can for the health and well-being of your child. A big part of this mission is to help you become an educated, confident caregiver for your child once you are on your own at home. That’s why parents and caregivers who nest are expected to take an active role in their child’s care.

If you nest with us, we expect you to participate in at least 50% of care each day.

“Care” can include things such as: • Feeding • Bathing • Giving medicine • Receiving hands-on training • Participating in education • Any other kind of care that is unique for your child 31

NESTING IN THE BLUE AND YELLOW UNITS If your child is placed in either the Blue Unit on the 2nd floor, or the Yellow Unit on the 3rd floor, you may nest in your child’s room. (Only primary caregivers and siblings may nest.)

Each room in the Blue and Yellow Units contains: • A medical space where your child’s crib or bed is located, plus a large, private nesting space with windows and lots of natural light • A private full bath • A large sofa that converts into a comfortable bed • Plenty of storage for your clothes and personal items • A flat-screen TV and an Xbox • An emergency call box and a regular phone • A small refrigerator for parent/caregiver use Yellow Unit Lounge: The Yellow Unit Lounge is located on the 3rd floor. This area is a family living space with a refrigerator, microwave, dining area and small living room with a TV. Videos and video games can be checked out at the front desk. Feel free to use this space if you want to get away from your room and hang out in a different place, talk to other families, etc. You are also welcome to enjoy the full kitchens and living spaces in the Lemieux Family Center on the 2nd floor as well.

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NESTING IN THE LEMIEUX FAMILY CENTER Families can nest in one of the eight private bedrooms located in the Lemieux Family Center. If you want to nest, talk with your Social Worker or unit nurse to sign-up for a nesting room.

On your first night of nesting, your unit nurse will help you get set up and see that you have the supplies you will need if your child is going to nest with you. They will make sure you understand how to contact the nurse’s station and how to use the emergency call box in the room in case of emergency.

You will be given towels, sheets, blankets, etc. to be used during your nesting stay. When you need fresh linens, just let your unit nurse or housekeeping know.

Room keys: When you begin a stay in the Lemieux Family Center, your nurse will give you a key to your nesting room. At the end of your stay, please be sure to return the key to your nurse as soon as you check out of the room. If you lose your key, let your nurse know right away.

Check out time is 11:00 am.

Please be sure that all of your belongings are out of your nesting room by this time.

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11

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1 2

9

3

8

4 7

6

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GUIDELINES AND RULES FOR NESTING We ask all families who nest to carefully follow these nesting guidelines and rules. Doing so helps ensure a safe and respectful environment for all. Anyone who does not follow the rules may lose their privilege to nest.

Quiet time: Quiet time is from 10:00 pm to 7:00 am. Keep all televisions, communication devices (laptops, iPads, cell phones), music, and conversations at low volume so you don’t disturb other families who are nesting.

Safe sleep practices: When your child (the patient) is nesting with you, you must follow these safe sleep rules: • Babies must sleep in their own crib on their back • No loose blankets, stuffed animals or other items may be in the crib • Babies are never allowed in bed with sleeping parents Meals and other food: Meals should be eaten in the kitchen/dining area • Only eat food that is yours, not food that is labeled with another family’s name • You may eat in your room but remove any food waste right away and throw it away in the kitchen.

Do not keep it in your room • All nesting families must clean up after themselves in the kitchen, living areas, and Austin’s Playroom • No food or drink is allowed in Austin’s Playroom Smoking: You may not smoke anywhere in the building or near the building. The ONLY place you may smoke is in the smoking shelter at the rear of the parking lot. You may not smoke in the playground area, in the gazebo, or along the walkway through the garden. If you smoke, please wear a smoking shirt or jacket that you can remove before you handle your child, and be sure to wash your hands thoroughly after you smoke.

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General rules for nesting: • Never lock your nesting room door if your child (patient) is with you in the nesting room • Swings, bouncy seats, and mamaRoos are not allowed in the family living areas or in the nesting rooms • No candles or incense are allowed in nesting rooms •

Do not remove any of the furnishings in the family living area (furniture, decorations, linens, bedding, kitchen utensils, electronics, toys, etc.) from the building. Doing so will be considered theft

Rules of conduct apply to all nesting families and their visitors.

Anyone who disregards these rules may lose nesting privileges or be asked to leave the building: • No yelling, swearing, racial slurs, violence, weapons or destructive behavior • No drugs, alcohol, or intoxication of any kind. If you appear to be drunk or high, you will be escorted off the property Only parents (or primary caregivers) and siblings may nest. No one who shows signs of being sick with an active infection (fever, sore throat, cough, etc.) may nest or visit The Children’s Home.

Your child (patient) and siblings must be with you or an adult on your visitor list at all times. Other patient families may not supervise them.

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“I cannot express enough how wonderful this facility was. The nurses and staff were amazing— always very helpful and were great at keeping us informed. If it wasn’t for this place, I wouldn’t have been able to stay around-the-clock and care for my daughter. Being here, we were able to get the medical care we needed and I was able to care for her like we were at home!”

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Lemieux Family Center

Section 5: Lemieux Family Center PRIVATE BEDROOMS KITCHENS DINING/LIVING AREAS AUSTIN’S PLAYROOM LAUNDRY ENTERTAINMENT AND COMMUNICATIONS TELEPHONE SYSTEM 37

The Lemieux Family Center was created in 2007 thanks to a generous gift from the Mario Lemieux Foundation. The name signifies more than just a physical space at The Children’s Home; it reflects our philosophy of care that puts family at the center of everything we do.

This section of the Handbook tells you all about the Lemieux Family Center—what it is, what you’ll find there, and some rules and guidelines for enjoying it.

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Section 5:

Lemieux Family Center All visitors and families are encouraged to use and enjoy the Lemieux Family Center, which is located on the 2nd floor. The space is designed to feel comfortable and home-like. You and your family can relax and be together, have private time and play time, and feel at home. In this relaxed setting you can also meet with your child’s doctors, nurses, Developmental Specialist, and Social Worker to receive guidance, education and support.

The Lemieux Family Center includes two large family living spaces. Each living space includes four private bedrooms, a full kitchen, a large dining table and chairs, and a living room.

PRIVATE BEDROOMS IN FAMILY LIVING AREAS Your family can stay overnight while your child is a patient at Pediatric Specialty Hospital. We call this “nesting” (See Section 4 in this Handbook for more information on Nesting). You may bring your child here to practice caring for him or her on your own. Some of the bedrooms are connected, so as space allows brothers and sisters may stay overnight, too.

There are two family living areas with four private bedrooms on each side. Each side has two bathrooms for families to share. Private bedrooms are furnished with a queen size bed, an armoire, a chest of drawers, and a flat-screen TV. Each bedroom has a communication system to connect families with the hospital units.

You will be taught how to use the system. It includes a: • White emergency call box – When the RED BUTTON on the call box is pressed, one nurse will answer the phone in the unit, and another nurse will immediately come to the Lemieux Family Center to assist you. This red button is only for an EMERGENCY with your child or in the Lemieux Family Center.

• Telephone for non-emergency use. You can reach the unit by picking up the receiver and dialing to the correct color-coded unit.

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KITCHENS Both kitchens in the Lemieux Family Center have a refrigerator, oven, microwave, dishwasher, and small appliances.

They are stocked with dishes, silverware, pots and pans, paper goods, and cleaning supplies.

• You are welcome to bring your own food and prepare it in the kitchen. Please put your name on all food items that you store in the refrigerator or in the cupboards. Please be respectful and only eat food that is yours, not another family’s.

• Be sure to take home extra food or throw away what you no longer want.

• All food items in the “help yourself” cabinets are free for all families.

• Food can be ordered and delivered. Go to the main lobby on the 1st floor to receive the delivery and pay for your food.

• You may eat in your child’s room in the hospital unit, but be sure to clean up after yourself.

DINING / LIVING AREAS The common shared areas of the Lemieux Family Center are large spaces where families can relax and be together, share a meal around a dining table, have private time and play time. Living areas have flat-screen TVs, a computer, and Xboxes.

Videos and video games are available to check out at the front desk.

Sshh: QUIET TIME in the Lemieux Family Center is from 10:00 pm til 7:00 am. During these hours, please do not use the kitchen or other common areas. Talk quietly and turn the volume down on televisions, computers, and cell phones.

Dress The Lemieux Family Center living spaces can be used by anyone who is visiting The Children’s Home. We ask

everyone to be fully dressed and wear street clothes—shirt, pants/skirt/dress, shoes—all the time, day or night, when you are in any of the Lemieux Family Center living spaces. If you are nesting, please avoid wearing sleepwear (nightgowns, pajamas, boxer shorts, lingerie) in any of the common areas.

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AUSTIN’S PLAYROOM Austin’s Playroom is a large children’s play area located between the two main living spaces in the Lemieux Family Center. Both kitchens connect to Austin’s Playroom. It is a happy, fun space where children (patients and siblings) and their families can watch TV, play with toys and games, read books, sit comfortably, and enjoy the large fish tank.

Food and drinks are not allowed in Austin’s Playroom. Each family is responsible for cleaning up after themselves in the playroom.

LAUNDRY There is a free laundry room located in the Lemieux Family Center. Feel free to use it to wash your child’s clothes (or your family’s clothes if you are nesting). We supply the laundry detergent so you don’t have to worry about bringing your own. Be sure to let your nurse know if the detergent supply is running low.

ENTERTAINMENT AND COMMUNICATIONS Families in the Lemieux Family Center can use and enjoy: • Free internet/WiFi connection • Large, flat-screen TVs • Xboxes • Videos and video games can be checked out at the front desk

WiFi Access Network: CHome Visitor Password: guest 41

TELEPHONE SYSTEM There are telephones located throughout the Lemieux Family Center (including the eight nesting rooms).

You may use these phones to call the hospital units or outside local numbers.

To use a phone, follow these instructions: • If you are inside The Children’s Home and want to call a location within the building, just dial its 4-digit extension number  • Calling an outside number: You must press 9 and then dial the phone number. For example, 9-412-555-1234.

LOCATION

EXTENSION

GREEN UNIT

3030 or 3033

PURPLE UNIT

3051 or 3054

BLUE UNIT

2068

YELLOW UNIT 3048 CHARGE NURSE

7981

FRONT DESK

1049

LEMIEUX FAMILY CENTER NESTING ROOM EXTENSIONS

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Room 1: 2008

Room 2: 2009

Room 3: 2010

Room 4: 2011

Room 5: 2028

Room 6: 2029

Room 7: 2030

Room 8: 2031

Patient and Caregiver Rights

Section 6: Patient and Caregiver Rights PATIENT’S BILL OF RIGHTS COMPLAINTS AND GRIEVANCES 43

Your child as a patient and you as a parent or legal guardian have certain rights as determined by the state of Pennsylvania.

This section contains your copy of the Patient’s Bill of Rights, as well as information about dealing with complaints/grievances.

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Section 6:

Patient’s Bill of Rights 1. A patient has the right to respectful care given by competent personnel.

2. A patient or their legally responsible party has the right, upon request, to be given the name of the attending

physician, the names of all other physicians directly participating in the patient’s care, and the names and functions

of other health care persons having direct contact with the patient.

3. A patient or their legally responsible party has the right to every consideration of their privacy concerning their

own medical care program. Case discussion, consultation, examination, and treatment are considered confidential

and should be conducted discreetly.

4. A patient or their legally responsible party has the right to have all records pertaining to their medical care treated

as confidential, except as otherwise provided by law or third-party contractual arrangements.

5. A patient or their legally responsible party has the right to know what hospital rules and regulations apply to their

conduct as a patient. The parents and/or legally responsible party for a Children’s Home patient have the right to

know the hospital’s rules and regulations that apply to their conduct as family members.

6. The patient has the right to expect emergency procedures to be implemented without unnecessary delay.

7. The patient has the right to good quality care and high professional standards that are continually maintained

and reviewed.

8. The patient or their legally responsible party has the right to full information in layman’s terms, concerning

diagnosis, treatment, and prognosis, including information about alternative treatments and possible complications.

9. Except for emergencies, the physician must obtain the necessary informed consent from the patient’s legal guardian prior to the start of any procedure or treatment, or both.

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10.

A patient or, in the event the patient is unable to give informed consent, a legally responsible party, has the right to be advised when a physician is considering the patient as part of a medical care research program or donor program, and the patient, or legally responsible party, must give informed consent prior to actual participation in such a program. A patient, or legally responsible party, may at any time, refuse to continue in any such program to which they previously have given informed consent.

11. A patient or their legally responsible party has the right to refuse any drugs, treatment, or procedure offered by the

hospital, to the extent permitted by law, and a physician shall inform the patient, or their legally responsible party of

the medical consequences of the patient’s refusal of any drugs, treatment, or procedure.

12. A patient or their legally responsible party has the right to assistance in obtaining consultation with another

physician at the patient’s request and own expense.

13. A patient has the right to medical and nursing services without discrimination based upon race, color, religion, sex,

sexual preference, national origin, source of payment, age or handicap.

14. The patient or their legally responsible party who does not speak English should have access, where possible,

to an interpreter.

15. The hospital shall provide the patient, or patient designee, upon request and in a reasonable amount of time, access

to all information contained in their medical records, unless access is specifically restricted by the attending

physician for medical reasons.

16. The patient or their legally responsible party have the right to expect good management techniques to be

implemented within the hospital, considering effective use of the time of the patient and to avoid the personal

discomfort of the patient.

17.

When medically permissible, a patient may be transferred to another facility only after the patient’s next of kin, or other legally responsible representative, has received complete information and an explanation concerning the needs for, and alternatives to, such a transfer. The institution to which the patient is to be transferred must first have accepted the patient transfer.

18. The patient or their legally responsible party has the right to examine and receive a detailed explanation of their bill.

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19. The patient or their legally responsible party has the right to full information and counseling on the availability of

known financial resources for the patient’s health care.

20. The patient or their legally responsible party has the right to expect that the health care facility will provide a

mechanism whereby the patient is informed upon discharge of their continuing health care requirements following

discharge and the means for meeting them.

21. A patient or their legally responsible party cannot be denied the right of access to an individual or agency who is

authorized to act on their behalf to assert or protect the rights set out in this section.

22. A patient has the right to be informed of their rights at the earliest possible moment in the course of their hospitalization.

23. A patient or his or her designee has the right to participate in the development and implementation of the

individual’s plan of care and to make decisions regarding that care.

24. A patient or his or her designee has the right to formulate advance directives and to have those directives followed.

25. A patient or his or her designee has the right to privacy and to receive care in a safe setting.

26. A patient or his or her designee has the right to be free from verbal or physical abuse or harassment.

27. A patient or his or her designee has the right to be free from the use of seclusion and restraints as a means of

coercion, convenience, or retaliation by staff.

It is the intent of this hospital to provide quality care and address any concerns you may have. Should you feel that your concerns are not adequately addressed or would prefer not to discuss these issues with hospital personnel, you have the right to refer complaints directly to the Pennsylvania Department of Health at: Pennsylvania Department of Health Acute and Ambulatory Care Services Room 532, Health & Welfare Building | 625 Forester Street | Harrisburg, PA 17120 | 1-800-254-5164 47

COMPLAINTS/GRIEVANCES Patients and families are encouraged to freely voice complaints and recommend changes. If you do, you will not be subject to coercion, discrimination, or reprisal.

If you voice a concern or complaint, it will not have a negative impact on the quality of care your child receives.

If you have a complaint about any activity associated with your child’s care at The Children’s Home, please contact the Charge Nurse or Social Worker.

He or she will be happy to address your concerns as quickly as possible.

You may also ask to speak with the Clinical Director to discuss your concerns.

Our goal at The Children’s Home is to provide the best quality care and address any concerns you have in a timely manner.

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Child’s Way

Section 7: Child’s Way® WHAT IS CHILD’S WAY? FREQUENTLY ASKED QUESTIONS REFERRALS AND ADMISSIONS 49

In this section of the Handbook, you will find information about The Children’s Home’s medical daycare program, Child’s Way.

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Section 7:

Child’s Way® WHAT IS CHILD’S WAY? What: Child’s Way is a Pediatric Extended Care Center (PECC) which offers an alternative or supplement to in-home nursing and therapy care for medically fragile children.

Who: Child’s Way is for medically fragile children ages birth to 21.

Where: Child’s Way is located at The Children’s Home of Pittsburgh.

When: Child’s Way is open weekdays from 6:30 am – 6:00 pm How: Like a typical day care center, Child’s Way is divided into five classrooms: infant, younger toddler, older toddler, preschool, and school-age. Each classroom is led by a team of experienced pediatric registered nurses and child care associates who work together to provide children with necessary medical care simultaneous to educational, developmental, and social activities. The staff-to-child ratio is 1:3 to ensure that each child receives all of the care and individualized attention they require. Children who require speech, occupational, physical, and early intervention therapies may have those services delivered on site and incorporated into their day.

Why: The Children’s Home of Pittsburgh saw the need for a program like Child’s Way in the community, as children requiring medical care had very limited options for day care: attend a traditional day care (where it was challenging to monitor and meet medical needs); receive nursing care at home (isolating them from early childhood experiences); or have family members provide full-time care (adding much burden and taking away ability to work outside the home.)

After several years of planning and legislative advocacy, The Children’s Home opened Child’s Way in 1998 as the first PECC in Pennsylvania.

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FREQUENTLY ASKED QUESTIONS Will my insurance pay for Child’s Way? Child’s Way maintains contracts with most insurance companies in the tri-state area. After obtaining the prescription from your child’s physician, The Children’s Home will contact your insurance company about approval and payment.

Your insurance company will determine the medical need for your child to attend Child’s Way. Does Child’s Way accept children with behavior problems and/or mental health diagnoses?

Children with medical needs and behavioral/mental health needs will be assessed on an individual basis to determine their eligibility for Child’s Way. Who provides transportation to and from Child’s Way? Child’s Way does not provide transportation. Most parents provide their own transportation. The Children’s Home is centrally located along bus routes so that children can take public transportation with their parents. Many of the children and parents also use the Medical Assistance Transportation Program to provide transportation to Child’s Way. More information available upon admission.

Does Child’s Way offer full- and part-time schedules?

Yes, children may attend Child’s Way full-time or part-time. On days they attend, children must arrive before 10:00 am Some insurance companies require your child to be at Child’s Way for a minimum of 4 hours a day.

Does Child’s Way provide before-and after-school programs?

Yes, children who have attended Child’s Way regularly and have reached the age of 3 may begin attending outside special education programs and return to Child’s Way after school with prior approval from Child’s Way administration and their insurance company.

Does Child’s Way provide respite care?

Child’s Way does not provide unscheduled respite or drop-off services. However, children can attend as little as one day per week.

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Is Child’s Way a preschool?

Child’s Way is a day care center with five classrooms separated by age, including a classroom for children ages 3-5 which utilizes the same preschool curriculum as Pittsburgh Public Schools. Child’s Way works closely with Pittsburgh Public Schools Early Intervention Program and Allegheny Intermediate Unit DART—Preschool Early Intervention, as well as itinerant therapists to bring high-quality, accessible educational experiences to all attendees.

Does Child’s Way provide physical, occupational, and/or speech therapy?

Children who qualify for early intervention and school age special education programs may have their services delivered at Child’s Way through outside agencies. Physician prescribed services are available based on individual need.

Child’s Way has no early intervention therapists on its staff, but will help coordinate these services for families.

Is Child’s Way open on weekends?

Child’s Way is closed on weekends. We are open Monday through Friday, 6:30 am to 6:00 pm Can Child’s Way staff babysit?

Child’s Way staff are not permitted to be hired privately by families for the purpose of baby-sitting. It is considered to be a conflict of interest.

Does Child’s Way participate in Keystone STARS? Child’s Way has earned a 3 STAR rating from the Keystone STARS program, Pennsylvania’s voluntary quality initiative for child care.

How many children attend Child’s Way? On average, 33 children attend Child’s Way each day, though the center is licensed to accommodate up to 60 children.

How is Child’s Way licensed?

Child’s Way is dually licensed by the Department of Health, as a Pediatric Extended Care Center, and by the Pennsylvania Department of Human Services as a day care center.

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REFERRALS AND ADMISSIONS Who can attend Child’s Way? Any infant, toddler, or adolescent from birth through age 21 who is medically fragile or medically at risk, including but not limited to any child: • who would qualify for in-home nursing services • with a short-term acute need for outpatient rehabilitation or nursing care • with long-term medical needs, including ventilator-dependent children • with at least a 4 hour need for skilled nursing services What is the cost to attend?

The cost for each child’s care is broken down into two portions: child care fees and medical service fees.

Child Care Fees The child care fee is $32 per day and is the responsibility of each child’s parent(s) and/or guardians. If a family is not able to afford all or some of the child care fee, financial support is available due to the generosity of The Children’s Home’s donors and supporters. Child’s Way staff will also provide assistance in attaining monies through Child Care Information Services (CCIS). Child’s Way has never turned away a family who was unable to pay for services.

Medical Service Fees The medical component of Child’s Way is reimbursed by health insurance. As a part of the Admission process, each child’s health insurance needs to provide approval for services at Child’s Way. The charges to health insurance are determined by the complexity of the medical care required by each patient. Child’s Way has contracts with the majority of insurance companies in the tri-state area and will be happy to assist families with contacting their insurance companies to obtain approval.

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VISIT CHILD’S WAY While your child is a patient at The Children’s Home, it’s a perfect time to visit Child’s Way and see what it’s all about. Child’s Way is located on the first floor. Just mention to your Social Worker that you would like to see Child’s Way. They will arrange a visit for you and make sure you get all the information you need.

To learn if your child may qualify to attend Child’s Way, contact The Children’s Home at 412-441-4884 or visit www.childrenshomepgh.org/child’s-way.

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“I loved this place! We were here for 3 weeks and our son improved so much. The staff and nurses were the best. They made me feel so safe and able to be the best mother I could be. I would definitely recommend The Children’s Home to anyone who might need their services. This place changed our lives

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© 2018 The Children’s Home of Pittsburgh & Lemieux Family Center. We pledge equal access to services and employment regardless of race, color, religious creed, disability, ancestry, national origin, age, or sex. The Children’s Home’s Pediatric Specialty Hospital is licensed by the Pennsylvania Department of Health.

5324 Penn Avenue Pittsburgh, PA 15224 phone: 41 2 .441.0700 toll free: 800.595.3440 fax: 41 2 .44 1. 0179 e-mail: info@chomepgh.org www.childrenshomepgh.org www.facebook.com/ChildrensHomePgh