Many parents, providers and state administrators were involved in the review process of this document. Their open willingness to provide careful and insightful review enhanced the outcome tremendously. Many thanks to all of the reviewers for their time and expertise:

Parents
Leslie Grant
Liz Hecht
Beth Swedeen

Waisman Center
University of Wisconsin-Madison
Pat Mitchell
Linda Tuchman

Wisconsin Coalition for Advocacy
Jeffrey Spitzer-Resnick

Wisconsin Council on Developmental Disabilities
Caroline Hoffman
Howard Mandeville
Jennifer Ondrejka

Wisconsin Department of Health and Family Services
Bureau for Quality Assurance
Barbara Woodford

Division of Health Care Financing
Division Staff

Division of Supportive Living
Sinikka McCabe

Wisconsin Personal Care Association
Nancy Anderson

William Schwab, M.D.
University of Wisconsin
Department of Family Medicine
Parent of a child with special health care needs

For Charlie, whose resiliency and inner strength keep me learning and loving all along the way.

We are living in a time when there are multiple demands on the American family. The two-parent family with a single wage earner is increasingly rare. Most families are stressed, overworked and struggle to make ends meet. Families who have children with disabilities are even more busy as they work to ensure that their children receive the appropriate support services. This journey of raising a child with special needs requires extraordinary time and energy, extending miles beyond "normal" parenting into a territory previously unknown. There is no doubt about this. Each parent must become a consumer of vast amounts of knowledge and information, learner of a whole new set of skills, master of a completely different language, and traveler on the emotional roller coaster of hope, despair and reward.

Given this, accurate information on home health care should be available to families, since it is one service that can alleviate some of the stress that families face. By utilizing home health care, a parent’s time and energy are more readily available. Home health care, an important service option when raising a child with a disability, is often unused or underutilized because of lack of accurate information or resources.

The home health care industry has primarily been built in response to an aging population and a decrease in lengthy hospital stays. Homemaker-home health aides are predicted to be one of the most rapidly growing occupations through 2006 (Occupation Outlook Handbook, 1998-99; HCFA, Health Care Financing Review, 1996; Department of Labor, Employment and Earnings, 1991-1995; U.S. Department of Labor, Bureau of Labor Statistics: Establishment Data, 1996). The industry is a combination of public and private organizations serving consumers by providing home health care typically billed to third party payers. Home health care is on the rise because it is often more economical to provide care at home instead of in a facility, and because people tend to do better emotionally and physically when they are in the comfort of their home (Buckingham, 1984). However, children with disabilities are an ever growing contingent of those in need of home health care.

Purpose and Use of this Guide

This booklet is intended as a primer for families who want to learn more or who want to enhance their skills as consumers of home health care for their children. While the information in the guide pertains to all families who want to use home health care, a large amount of the information focuses on home health care funded through the Wisconsin Medicaid Program. The reason for this is that Medicaid is the largest single payer for home care for children. Therefore, Medicaid regulations and terminology will be described and the term "home care" will be used to be consistent with the Medicaid language. This overview will address the following aspects of home care:

• Definitions of home care;
• Looking for home care;
• Seeking approval for home care;
• Making home care work for you;
• Recruitment, training, and retention; and
• Overall benefits and challenges.

This booklet will limit its focus to families with children under age 18, though many, if not most, of the issues, strategies and resources are applicable to a wide variety of individuals who require home care. The term "children" will be used to include: infants, toddlers, school-aged children, youth, and adolescents. The term "parent" refers to an individual in the primary caregiving role. Families are encouraged to learn more about home care and explore how it can enhance the quality of life for the entire family.

At the end of this booklet, three additional sections contain the following materials for families:

• Tools and Tips: Suggested approaches to sharing information through the creation of a home care book, medication log, sample schedule and range-of-motion description.
• Reflections For Caregivers: Words of reflection which may provide comfort to parents in the caregiving role.
• References and Resources: Full references for all materials cited in the booklet will allow further reading on the topic. In addition, other related materials are listed, including: a listing of advocacy agencies; excerpts from the Wisconsin Administrative Code; and a brochure on private duty nursing.

How does Home Care Differ from Respite?

Home care differs from respite, though in some cases the actual worker may be the same person. Respite workers may not need any formal training to provide care for a child, whereas a home care worker is required to have the appropriate training corresponding to the child’s care level. While respite can be provided in a setting outside of the home, such as a worker’s home, or a community or recreational site, home care takes place primarily in the home.

Additionally, respite and home care are supported by separate funding sources and agencies. Medicaid, for example, does not pay for respite. While these differences do exist, many similarities abound, and the information on these pages may be relevant to both approaches when seeking and securing care for a child.

What are Primary Home Care Providers?

Medicaid home care providers include home health and personal care agencies, as well as independent nurses, all of which provide individuals with care where they live. Home health agencies can be public or private, licensed by the state’s Bureau of Quality Assurance (BQA) and certified to participate in Medicare. Some home health agencies offer a variety of services including nursing, therapy, home health aide and personal care. A personal care agency can be a licensed home health agency, a county agency or an independent living center. Agencies differ widely in their philosophy, criteria and approach. It is wise for parents to research the agencies in their communities to determine which one(s) best matches their own style and need. Independent nurses may also be home care providers.

What are Home Care Services?

A wide variety of services can be provided by home care workers, depending on the individual’s level of need. Licensed professionals include nurses and therapists who provide skilled care, such as intravenous injections, under the direction of a physician. Home health aides, personal care workers and homemaker assistants assist with activities of daily living, such as dressing and bathing. In addition to assisting with activities of daily living, a personal care worker may provide assistance with medically oriented tasks if delegated by a registered nurse. Home health aides assist with medically oriented tasks that are needed to maintain the child’s health or treat a medical condition. It is important to emphasize that for all care levels, a registered nurse ensures supervision and coordination of the recipient’s care. Below is a brief summary of the primary home care services within the context of Medicaid-funded home care, as defined by the Department of Health and Family Services:

Skilled Nursing Services Registered Nurse (RN) or Licensed Practical Nurse (LPN)

• Intermittent care (less than 8 hours a day)
• Private duty nursing (8 hours or more a day)
• Respiratory care services

Skilled nursing is divided into two categories, based on the number of hours of care a child receives. Home health skilled nursing, also called part-time intermittent nursing, is provided to recipients who require less than eight hours of direct skilled care per day. Private duty nursing is provided for individuals who require eight or more hours a day of skilled care. Both types of nursing tend to supplement the care provided by informal support systems, including other members of the child’s family. Sections 107.11(1)(c), 107.11(2)(a) and 107.12(1)(a) of the administrative code define skilled nursing. The Reference and Resource section of this guide contains a detailed brochure from the Department of Health and Family Services on Medicaid private duty nursing.

Home Health Aide Services

• Medically oriented tasks, assistance with activities of daily living and specified household tasks.
• Basic training required is a minimum of 75 hours, including 16 hours in a clinical setting and 16 hours of classroom instruction. In-service training of 12 hours per year is also required.

The Wisconsin Administrative Code defines home health aide services as: "medically oriented tasks, assistance with activities of daily living and incidental household tasks required to facilitate the treatment of a recipient’s medical condition or to maintain the recipient’s health." (WI Administrative Code, HFS 107.11 (1)(b)).

Personal Care

• Primarily "hands on" assistance with a child’s physical needs by a personal care attendant.
• Assistance with eating, bathing, dressing or other activities of daily living.
• Training consists of a minimum of 40 classroom hours or six months equivalent experience.

Wisconsin Medicaid defines personal care services as: "medically oriented activities related to assisting a recipient with activities of daily living necessary to maintain the recipient in his or her place or residence in the community." (WI Administrative Code, HFS 107.112(1)a).

The difference between a home health aide and a personal care worker is based primarily on training, responsibility, child’s complexity of care and level of medically oriented tasks. Home health aides are certified nursing assistants who have received a minimum of 75 hours of training and an annual in-service training. Personal care workers are required to have a minimum of 40 hours of training in the provision of personal care services. In general, a home health aide is prepared to carry out more medically oriented tasks such as gastrostomy-tube (g-tube) feedings and giving medications. A personal care worker focuses more on bathing, dressing and simple transfers. Licensed and certified home health agencies are required to comply with additional federal and state requirements that do not apply to personal care agencies. Home health aides often provide short-term visits to individuals transitioning from hospital to home. The important aspect for both categories of home care worker is the involvement of a nurse who delegates responsibility and supervises the care provided as often as necessary.

Clarifying the distinctions between home health aides and personal care workers is important for families to understand since it can be confusing and affects the care families receive. Each nurse and the associated agency provider decides what level of care it is willing to delegate to the direct home care worker. Some nurses and agencies will not delegate medically-oriented tasks to a personal care worker, while others will. The result is that any two parents with similar children receiving services from two different agencies may receive home care workers in different categories. In short, when a nurse delegates a task to a worker, her nursing license is on the line and this is one reason for the variability in home care service categories.

How is the Level of Care Decided?

A family’s initial assessment will involve questions about the child’s level of care and this information will help to determine the type of care needed (e.g., personal care versus skilled nursing) and the number of hours of coverage. Each child is evaluated individually. It is important to emphasize that Medicaid covered services are the same throughout the state of Wisconsin. The variation across the state as to what each child receives for home care appears to be contingent not just on the child’s needs, but also on how the agency decides to assume responsibility for the child’s care. A covered personal care service, for example, is: "Meal preparation, food purchasing and meal serving," 107.112 (1)(b)11. One family comments:

"It takes my child so long to eat. Most kids eat lunch in 15 minutes, but it can take us easily an hour to feed Chris. To prepare his meal takes even more time because we have to buy special high-calorie items, then specially prepare the food, so he doesn’t choke on it. If he doesn’t get enough calories, he is likely to lose weight and get sick. And we have to hold him to feed him, since he cannot hold a spoon or sit up on his own and proper positioning is crucial so he doesn’t choke or aspirate on his food. So there is a lot of pressure on us to feed him well in an uninterrupted, safe manner."

In this situation a personal care worker would be trained to purchase the appropriate foods, prepare the food and feed Chris. If a child’s total meal time (preparation, feeding and clean-up) is one and a half hours, and the child eats three or five times a day, then potentially a personal care worker could be available for a total of five hours for feeding alone. Additionally, the child may need assistance with personal hygiene (bathing, tooth brushing, skin care, toileting) tasks that may require a total of another hour and a half each day. Now the family could potentially receive six and a half hours of personal care a day. Household chores that are incidental to personal care may account for one third of the Medicaid hours of care, but only certain tasks are allowed. Cleaning the kitchen after the child’s meal preparation is permitted, for example, but doing the parents’ laundry is not.

The cares described above could be met by a personal care worker. However, for children with serious medical conditions, skilled nursing care may be required. Airway care, for example, for a child with a tracheostomy, oxygen therapy and/or ventilator will require skilled nursing. Families may use creative approaches to supplementing Medicaid home care with other funding sources such as Medicaid waiver programs that have few restrictions on the medical necessity of the activities. For example a family may arrange for a personal care worker for meal time and then use Community Options Program (COP) funds to cover a trip to the mall.

How is Home Care Paid for?

Home care is expensive and typically paid for in one of several ways: private fee-for- service insurance or managed care plans; Medicaid/Medical Assistance; Community Option Program (COP), Community Integration Program (CIP); and out-of-pocket. Another option worth exploring is the Family Support Program in Wisconsin, a flexible funding source for families with children with disabilities living with their families. County programs which may help families are typically available through the county human services or community program agency. In the State of Wisconsin, most home care for children is funded through the Medicaid program. The Wisconsin Administrative Code (excerpts in reference section) delineates home care regulations, including a clear listing of covered and non-covered services. Parents will benefit from accessing a copy of this code from their public library, by ordering a copy of their own or by viewing it on the World Wide Web (see references). It is important to point out that each individual is initially assessed for home care eligibility and a level of care is determined before the care is authorized. In families where the child’s health fluctuates widely, it may be possible to have skilled nursing at times of extreme health risk and a personal care worker at times of relative stability.

What is Medicaid Prior Authorization?

Home care provided as a Wisconsin Medicaid covered service requires a physician’s order and prior authorization. The Wisconsin Administrative Code offers the following definition: "HFS 101.03(134) ‘Prior authorization’ means the written authorization issued by the department to a provider prior to the provision of a service. Note: Some services are covered only if they are authorized by the department before they are provided. Some otherwise covered services must be prior authorized after certain thresholds have been reached." It is important for parents to realize that the Medicaid home care prior authorization (PA) procedure involves several steps and may result in a delay or denial in the start-up of home care. First, the home health agency must complete the PA paperwork in a timely manner and then submit it to the Department of Health and Family Services, Bureau of Health Care Financing, which reviews the request. The PA may be returned to the provider if it is incomplete or has clerical errors. The provider must make the necessary changes and resubmit the PA. This cycle can occur several times if the provider’s information is incorrect or absent. Ultimately, the request for service is either approved, modified or denied. If it is approved, the provider is notified and informs the family that services may begin. If it is modified or denied, the parents will receive a letter from the department with their appeal rights outlined. The term "modified" indicates that the PA is approved with changes from the original request. The term "denied" indicates that the entire request was not approved. The Prior Authorization (PA) Process-Simplified outlines the prior authorization process in a simplified version.

"To tell you the truth, I don't really know how our home care is paid for. We are on several county programs and I am really confused about how different things are paid for."

The Prior Authorization (PA) Process - Simplified a a a a a a Parents request home health care services from provider (Provider is agency or independent provider)

Provider completes and sends in PA (Prior authorizations cover a specified period of time and must be resubmitted each time a requested service is to be extended)

State Medicaid office processes PA

If corrections or supplemental information is needed, PA is returned to provider, provider responds and returns PA to state, state Medicaid office again processes PA.

PA is Approved, Modified, or Denied

If Denied, family receives letter with appeal rights

Provider informs family of PA decision

Family outcome:
Either "approved" service begins, "modified" service begins, or "denied" service is accepted or appealed. *** Modified may indicate a change from the original PA request. For example, if 8 hours a day had been requested, a modified outcome may mean approval for 6 hours a day.

In some situations, county programs such as COP, CIP and/or Family Support may supplement Medicaid services for the child’s non-medical needs. These county programs are not insurance yet might have funds to partially support home care depending on need and available funds. Parents can gain further information about programs in their counties by calling their local County Human Services office.

Identify an Agency

There are many ways to identify the home care agencies in your community. Below is a list of sources of information:

Contact the Agency

Families should identify and contact their local home health agencies and find out more about each program. Before calling, think about questions you would like to ask. Below is a sample protocol for your initial contact with a home health agency:

• Identify yourself and your reason for calling (to gather information on home care).
• Describe your child’s age, condition, and needs.
• Say: Our family has ____ insurance and my child has Medicaid coverage as a back-up.
• Let them know where you live.
• Ask: Could your agency provide home care for my child?
• Ask a parent of a child with complex health needs if he/she can recommend an agency.
• Ask your local community provider, (e.g., Family Support Program, Respite, Community Integration Program, Community Options Program), county human services and/or public health department.
• Look in the yellow pages of the phone book (e.g., listings under "nurses" or "home health services").
• Call the State of Wisconsin, Department of Health and Family Services (DHFS), Division of Public Health, Wisconsin Maternal Child and Health Program (MCH) and ask for the contact information for First Step 1-800-642-STEP and the CSHCN regional resource centers 1-800-441-4576. DHFS’s Children and Families Services Section, (608) 266-7469, may also be able to assist families.
• Order the booklet from DHFS, Bureau of Quality Assurance, titled: Licensed Home Health Agencies. This booklet lists all of the Medicaid licensed home health agencies, alphabetically by provider or alphabetically by town/city, in the state of Wisconsin. This booklet lists the home health services (e.g., nursing, home health aide, personal care) each agency offers, a contact name and phone number. It costs $5.00.
• Contact the Coalition for Independent Living Centers (see references) to determine if a personal care program is offered in your community.
• Contact disability-specific support groups (see references).

At this point, if the agency says they do not have available personnel to meet your needs, call another home health agency in your area. This may feel disappointing after the energy and time you spent preparing for this call. You can call other home health agencies or work with another program, such as the Family Support or Community Options Program to explore other ways to find home care.

If, however, the agency indicates that they may be able to assist you, consider asking the following questions:

Questions to Ask the Agency

• Do you bill private insurance and/or Medicaid?
• What are the usual steps and time line for signing up for home care services?
• Do you provide the home care workers or is it our responsibility to find care workers? or We have a person in mind who could provide excellent care, would you consider her as a potential worker?
• Is prior authorization necessary and how long does that process take?
• What is your agency’s philosophy about serving families who have children with disabilities and/or special health care needs?
• Who is responsible for scheduling, training and supervision of the home care workers?
• How are your staff trained and what is their experience with children with disabilities?
• How long does a typical worker stay with your agency?
• How do you determine which home care workers come to our home?

A less desirable outcome from the phone call is the realization that you are not able to work with the agency. When this occurs it is best to begin again and search for alternative agencies or alternative plans. While this may feel discouraging, it is better to learn up front that an agency cannot meet your needs, rather than learn it a year down the road when a large amount of energy and time has been invested.

Nurses in Independent Practice

Medicaid-certified nurses, who are not affiliated with an agency, are an option for families with a child who requires eight or more hours a day of skilled nursing. If nursing services are not available to a family through a home health agency, then an independent nurse may provide the services. There are benefits and risks for families who hire an independent nurse. The benefits are that the agency as a third party is eliminated and therefore the communication is between the family and nurse alone. However, this also puts a burden on the family to be solely responsible for recruitment, background checks, training, supervision and a back-up plan. The level of risk to the family is magnified by the lack of outside support, especially if something should go wrong (e.g., poor performance, unethical behavior). Families need to consider the potential associated costs for unemployment and worker’s compensation should a nurse be asked to leave or acquire an injury on the job. Parents are strongly encouraged to do their homework before hiring an independent nurse, asking many questions of the applicant and the references. Below are a few questions to consider:

Questions to Consider

• How long has the nurse been in independent practice?
• Is the nurse certified as a Medicaid provider?
• Is the nurse’s license current?
• What other licenses or credentials does the nurse hold?
• Have any complaints been filed with the Department of Health and Family Services?
• Is confidentiality a priority within the nurse’s approach to care?

Prior Authorization

Upon completion of the agency’s assessment for home care, there is a period of time when families must wait to hear whether or not the requested service has been approved. This process may take a few weeks and it may be hard to wait.

While Medicaid home care is a covered service in Wisconsin, the process of Prior Authorization is required as a quality control measure to evaluate the requested service and ensure the appropriate use of funds. When reviewing a provider’s prior authorization request, the Department of Health and Family Services considers medical necessity, appropriateness, cost, frequency, quality, timeliness, alternatives and other related areas. Prior authorization is described in greater detail in the Administrative Code section HFS 107.02(3). A detailed handout from the Department, Private Duty Nursing, (see reference section) also describes in clear detail the prior authorization process as it relates to private duty nursing.

Advocacy

It is important that parents have accurate information about home care and the Medicaid requirements for prior authorization, covered and non-covered services. Families may also request copies of the prior authorization form and related materials from the home health agency so that they are "in the loop" of the process and will be better able to understand how the process progresses. The simplified prior authorization chart on page 9 shows how typically a parent requests a service and is generally then "out of the loop" until final notification is received. Many prior authorizations are returned to home health agencies due to clerical errors such as a missed digit in a number, a misspelling, or an unanswered question. A family may consider offering to review the document as a way to become better informed and to potentially catch minor clerical errors. Needless to say, parents need to consider how they asked to be involved so their interest is perceived as an offer of assistance and desire to be involved, as opposed to a suspicious assumption that the agency may have made mistakes. This point is especially important since the prior authorization process may be your first experience in working directly with the agency.

Complete and accurate information alone will not suffice, parents need to develop skills to advocate for their child when a request for prior authorization of a service is denied. Should a parent seek home care and be denied, there is a course of action to follow. Many families keep a notebook in which they log all phone calls, correspondences and meetings with providers and administrators. This is a useful tool to help you keep track of your efforts to seek home care and can be used to prepare your appeal. Other families have sought out the support of advocacy agencies to receive strategy advice or to get help in appealing. Still, other families have not kept records, nor contacted advocacy agencies and have independently worked with state administrators to build relationships. A parent’s search for one person within the system who listens carefully and expresses sensitivity for and a willingness to look into the situation, may result in an improved outcome for the family. These different approaches may reflect the past experiences which individual parents have had and not the individual’s ability to advocate positively.

There are several agencies in the state to offer information and support, and some to offer legal services, to families with children with disabilities:

"I could never have gotten the amount of nursing care I needed without the support from the advocacy community."

Advocacy Organizations

• Wisconsin Council on Developmental Disabilities
• Wisconsin Coalition for Advocacy
• ABC for Health
• Family Voices
• The Arc-Wisconsin

"In almost every benefits program and civil rights statute directed toward individuals with disabilities, Congress has included the right to individual appeal, first to a disinterested decision-maker and thereafter, if necessary, to the courts."
- K. Seelman, Director National Institute on Disability and Rehabilitation Research

The References and Resources section contains detailed contact information for these agencies. There may also be additional advocacy organizations in local communities.

In addition, Section HFS 104.01 of the Administrative Code outlines the "Recipient rights." Section 104.01(5) "Appeals," delineates the steps to a fair hearing. If a prior authorization is modified or denied, the parent always receives a letter explaining the reasons for the decision and the options a parent may pursue. The Department of Health and Family Services, Division of Health Care Financing recommends the following options:

A Parent’s Rights

• You may appeal a prior authorization decision by requesting a fair hearing before an independent administrative officer.
• Before beginning the appeals process, you should discuss the decision with your provider to make sure that the provider submitted all the necessary information in the prior authorization request.
• If additional information or corrections are needed, the provider may submit the prior authorization request for reconsideration.

From: Wisconsin Medicaid, Private Duty Nursing: A Guide for Medicaid Recipients and Their Families, POH 1122, April 1999.

Overall, families have benefited from formal and informal advocacy routes by building positive relationships with advocates, home care agencies, and state administrators. Effective people skills, coupled with a strong knowledge base, enhance the ability to meet the needs of your child and family. The following suggestions are offered to parents:

Ways to Build Your Advocacy Skills

• Become familiar with the Wisconsin Administrative Code;
• Develop interpersonal skills to clearly state your needs in a positive constructive manner;
• Know what advocacy agencies can assist you should barriers arise;
• Network with other parents and advocates and share strategies;
• Attend conferences or workshops that will enhance your skills and knowledge base;
• Keep a record of phone calls, home visits and related correspondences with advocates, agencies and state administrators; and
• Look for opportunities to offer the parent perspective in policy development.

The following sections in this guide are based on the assumption that you have located a home care agency, received approval for funding and that you are now ready to get a worker on board.

To prepare this booklet, information was gathered from written materials as well as interviews and focus groups providing input from families who are currently using home care for their children with special needs. Agency providers and state administrators also gave generously of their time and expertise. From this research, critical findings surface around four central themes: information, recruitment, training, and retention. This section reviews the findings and examines the challenges of these central themes as well as strategies to address the challenges.

"I want people to see my child for who she is, not for her disability."

Strategies:

While it can be a challenge to find home care workers whom you can trust and value, there are some successful strategies that families have shared. Families should consider how they find care workers. Is it out of your control or do you have a significant role to play? By taking an active role in choosing a home care worker, by investing time and energy up front, you are more likely to have a successful outcome.

Parents across the state have discovered a creative assortment of recruitment strategies. One mother always selects a home care worker through word-of-mouth by someone she trusts who has recommended the individual. One family sends a personal letter to friends, asking if they know of anyone who might be interested in working with their child. Other parents ask the home health agency for a few names and then initiate telephone screening and direct-contact interviews. Some parents have tapped into the availability of a close relative who would rather do meaningful work with a nephew than a shift job. Families living near colleges and universities have posted their personalized job announcements on bulletin boards in targeted departments (e.g., nursing, physical therapy, special education). Recruitment may be out of a parent’s control depending on the home health agency’s policy. Yet even if there is no parental control over the recruitment process, it is important for each family to take some time considering what qualities they would like to see in a home care worker. Parents may benefit from asking themselves the following questions before they seek a worker:

Know What You Want

• Do I want the worker to be a relative or someone I already know in some way (e.g., cousin, aunt, church member, neighbor)?
• How long do I hope this person will work with my child (e.g., at least a year, for the summer)?
• What are the human resources in my local community (e.g., college students, W2 recipients, second income/part-time)?
• What are the qualities most important to me (e.g., honesty, trustworthiness, safety, good communicator)?
• How independent can the caregiver be (e.g., can I leave my child alone with the worker and not worry)?

What to Include in a Job Description

• Wage
• Hours/days
• Characteristics of applicant
• Expectations of job
• Location, transportation
• Specific contact information
• An indication of your family values uniqueness, interests, and what will be fun/rewarding about the job

Sample Job Description.

Home care worker, $8/hr, 3-7 pm daily. Provide care in our home for our 8-year-old daughter with a physical disability. Looking for an energetic, thoughtful, sensitive individual to assist with activities of daily living (dressing, feeding, bathing). A great opportunity for those preparing for the "helping" professions. On bus line. Call Helen at 333-0409, evenings.

Once you have completed and posted the job description, phone calls will come. Or if an agency is pre-selecting care workers, you may still receive calls from a pool of potential care workers. (Note: some families may not be provided with input into this process through agency policy.) Being prepared for the calls with a telephone screening approach will make this process easier.

What to Ask During a Telephone Screening

• Experience with individuals with disabilities:
  Could you tell me what experience you have had working with adults or children with disabilities?
• Hours/days available:
  How many hours are you hoping to work? What days are you available?
• Purpose in seeking position:
  Can I ask why you are interested in this position?
• Other commitments/responsibilities:
  Do you have another job or are you in school? How long do you plan on being in this area?
• Children:
  What experience do you have with children? Do you enjoy interacting with children?
• Transportation:
  Do you have a car or another way of getting here?
• Physical strength:
  This job requires lifting my child who weighs _____ pounds. Would you be able to perform this function?
• Allergies:
  We have a cat, are you allergic to animals?
• Ask them to problem solve:
  How would you handle the following situation __________?
• Ask if they have questions:
  Do you have any questions?

What to Ask During an Interview

(Can be mixed into conversation or asked as discrete questions)

• Determine length of commitment:
  When you think about this position, how long do you anticipate working here?
• Examples of personality traits:
  Can you tell me about a time when you had to have incredible patience in order to do something? Can you tell me about a time when you had to be exceptionally energetic, playful or creative? Have you ever encountered a conflict in the workplace and if so, how did you handle it?
• Knowledge about people with disabilities:
  Have you ever known a person with special needs; a neighbor, classmate, cousin?
• Experience with children:
  Have you ever worked with children: baby-sitting, camp?
• Hobbies, special interests:
  What do you like to do in your spare time: art, sports, garage sales?
• General work experiences:
  What have your previous work experiences been? What types of experiences have been the most difficult for you?
• Qualifications:
  What sort of training, certification or licensure do you have?

During the interview, the parent should make sure that the applicant has complete information, so there is an understanding of what is involved in caring for his/her child on good and bad days. Families repeatedly emphasize the importance of being up-front with potential care workers, believing that if the worker chooses to stay knowing the full range of the child’s situation, then the worker will be prepared and do a better job. If a child has episodic bouts with illness, self-abusive behavior, pain or other health conditions that come and go, it benefits all involved if these episodes are clearly addressed early on in the process. A parent may say to an applicant: There will be days when my son cries almost all day and try as I may, I can’t help him feel better. These days will be very frustrating and sad. There will also be days when he is feeling great, laughs out loud and wants to get involved in the world around him.

Knowing your own values and how those relate to household practices is something to share as part of the interview process. For example, if television is restricted in hours or days this should be clear up-front. The parents’ approach to discipline should be stated and an applicant needs to be comfortable in following through on the parents’ approach, not their own. Religious beliefs are highly personal and parents may choose to ask the applicant about whether or not his/her religious beliefs will potentially be in conflict with the families approach to daily life. For example, in one family a child participates in yoga, and the personal care worker has refused to be involved in this due to her personal religious beliefs. The level of cleanliness in a home can at times conflict with an applicant’s personal standards. Again, addressing these issues in the very beginning and using the information gathered as part of the selection process can alleviate conflicts down the road.

In the example provided earlier, where the parent shares that there are days when she cannot console her child, the parent understands that patience, an easy-going style and understanding are crucial characteristics for working with children who are medically complicated.

Things to Look for During an Interview

• Individuals who show up on time as scheduled for an interview may indicate future punctuality, responsibility and reliability.
• An individual’s ability to communicate his/her ideas and respond to your questions may indicate listening and speaking skills, and breadth of knowledge which may indicate an ability to respond to instructions/feedback, initiate communication, and articulate difficulties in an emergency.
• An individual’s ability to interact with the children may indicate a genuine enjoyment of children, if children like the applicant, it may indicate a knowledge of age-appropriate behavior and language. Look for the way your child is addressed and/or included by the applicant through greeting, eye contact, and voice. Does the applicant talk directly to your child? Does the applicant speak more simply, slowly and loudly when addressing your child? Does the applicant say good-bye to your child upon departure?
• Individuals who have previous experience with children and/or at least one person (cousin, neighbor) with a disability are more likely to be comfortable and prepared to work in home care with children.
• Individuals who have career goals involving the helping professions and look at this experience as a stepping stone to their careers are more likely to be stable workers.
• An individual’s body language and type of eye contact may lead you to think he/ she is judgmental.
• Individuals who are athletes, lifeguards or have experience in manual labor may be more likely to have the necessary physical strength for the job.
• Individuals whose values are rooted in helping those in need may be strong candidates.

What to Think About During an Interview

• Do you have a gut feeling that this person would work out well?
• Are the applicant’s interests similar to yours?
• What are his or her values and how well do those match yours?
• What is your hoped for outcome from the match and how does that blend with the applicant’s hoped for outcome?
• Is this likely to be a mutually beneficial relationship; is there potential for reciprocity?
• Is there something about this person that makes you want to get to know her better?
• Is there something about this person that really annoys you but you cannot figure out what it is?

After you have interviewed the available workers, think about each one and try to envision him or her in your home and with your child. Ask your children what they thought of the applicants. While you ideally want the best qualified worker, parents report that there may be times when they have to "settle for less," because the need for home care is so great that for a short-term solution, something is better than nothing. This is important because lack of home care may result in a parent’s need to stay home, creating a loss of employment. In the attendant guide Working Together (1998), the authors caution: "Beware of Being Too Choosy," pointing out that part of the process of obtaining and securing home care is dependent on some compromises. It is crucial for families to identify those pieces of the puzzle they are willing to relinquish (e.g., exact hours preferred), and those that cannot be compromised (e.g., safety). A long-term lack of home care may also result in harm to the child, either through unavoidable neglect or general inability to provide quality care because of other competing commitments. A lack of long-term home care may also result in harm to the caregiver, whether through physical or emotional strain.

Follow-Up

Typically the home health agency will obtain references, yet you may also wish to ask the applicant for two references. You may want to say: I really feel positive about the experience you bring to this position. I always ask applicants for two to three references just as part of this process. Could you provide me with references, perhaps including one person who has known you for a long time? Some applicants will need to call you back with phone numbers and names. When you contact the reference, below are some sample questions to consider. Be sure to begin by clearly identifying yourself, your reason for calling, and ask if this is a good time to talk. Be sure to close by thanking the reference for his/ her time and information.

What Questions to Ask a Reference

• How long have you known _______?
• In what capacity have you known _______?
• Can you speak to his/her strengths?
• Can you speak to his/her weaknesses?
• What do you think will be the most challenging to him/her about this job?
• Would you recommend ______ to work with a child?
• Is there anything else you’d like to tell me?

Parents emphasize the importance of being up-front with the new worker and sharing information openly. Working side-by-side with the new worker offers you a chance to create a conversational approach to training. You may demonstrate a procedure and then say, "Would you like to try now?" Ask how they think it went and then provide your feedback. After the new worker has demonstrated the ability to provide care, staying close by and available for the first few weeks will increase the quality of the training. Listening to the new worker and the child while at work in another room is a useful way to monitor the situation and also allows you to intervene when necessary. For example, many children will test a new worker, and the parent’s role is to inform the care worker about what is acceptable behavior and what is not. Parents need to look for the quality of the worker’s performance.

Ways to Evaluate Performance

• Is the child’s safety a top priority?
• Is the follow-through on your training goals being carried out as instructed?
• Is the use of language age-appropriate and positive?
• Is the care worker demonstrating an effort to learn and do a good job in a conscientious manner?

Frequent and clear feedback during the orientation phase will likely improve the overall success of the match. It is a good idea to "check-in" at the end of each day during the initial orientation phase. Ask if the worker has any questions or concerns. It is harder to give critical feedback after the training phase. Below are several suggestions for developing your own role as a trainer of new home care workers.

How You Can Teach the New Worker the Job

• Recognize that you do have an influence on how the new worker perceives your child and his/her disability.
• Accept that the new worker is a new learner in this situation (your home) and will not know everything right away. Remember back to when you first learned caregiving skills, and demonstrate respect for that experience in others.
• Provide support to the new worker in a warm, instructional way. Acknowledge the new learner’s abilities as they surface. Emphasize the positive.
• Model conscientious behaviors and thinking outloud to encourage the new worker to approach the work as you do. Model age-appropriate language and interactions.
• Practice and develop interpersonal skills as you create a learning environment that is interesting, clear and supportive.
• Nurture an approach of high expectations, coupled with forgiveness and understanding. Remember that this work can be very difficult emotionally and physically; home care workers need support.

There is no way around the hurt feelings that naturally surface for many families when they suddenly lose a worker. Healing emerges from a careful review of what occurred and an objective understanding of why the worker left. Periodic self-evaluation of your own behaviors is important to the ongoing process of improving your own communication and management skills. And there are times when we all make regrettable mistakes.

For many parents, there is comfort in understanding why a match did not work out. Many times it just was not a good match and no one is to blame. Families may again refer to the Wisconsin Medicaid Administrative Code, which delineates rules about discharge. Agencies discharging clients have their own rules, yet also need to follow the code regarding giving notice, HFS 105.16(10)(f), 105.19(9) and 107.112(3)(b). In general, licensed Medicaid certified home health agencies must inform the parents if a service is discontinued and assist parents to find another agency for that same service. These guidelines are outlined in section HSS 133 of the Administrative Code and the Bureau of Quality Control governs this area. Families can file complaints if necessary and may begin by calling the Medicaid Recipient Hotline.

Strategies:

To ensure the success of the match, parents report that communication is the key. Some families keep a communication notebook, where all information is shared between home, school and community. This allows the home care workers to see the child as a complete person across environments. One family asks all workers to initial the notes after reading them to ensure that everyone stays in the information loop. Other parents develop "goals for the day," or checklists that are updated daily to confirm that key activities are accomplished.

When families do encounter challenges to home care, the following approaches may help them address the problem before it results in an irreconcilable difference.

Ways to Address Concerns:

• Be direct, with a smile and friendly tone.
• Acknowledge that something is difficult to do and that it took you a while to learn how to do it, then demonstrate the correct way to do it.
• Model behaviors you want to see in them.
• Ask the worker how he/she is doing with a particular procedure and acknowledge the parts of the procedure that are going well and what needs attention.
• Determine if the difference is detrimental or just different and okay.
• Talk with a trusted friend and brainstorm about solutions.

While communication around issues of the child’s care is critical, parents have also found that personalized communication with the worker is needed. Developing a relationship between a parent and worker increases the prospects of a mutually beneficial outcome. First, you as the parent are in a better position to foresee difficulties if you have frequent conversations with the worker. Asking questions about the worker’s life allows you to gain a sense of future plans, interests and strengths. You can then capitalize on any hobbies or special talents. This conversation also gives the worker the message that you care about him/her, that he/she is not just a person coming into your home to do a job. This mutual sharing and communicating is an essential component of an effective partnership.

Parents report that successful matches between parent and worker ultimately result in long-term relationships, a stronger bond between child and worker and increased trust and caring on both ends. Many families talk about a special worker who has stayed connected to their family for years. In these situations, the level of care sprouts from deep roots; parents use the word "love" to describe the relationship. Families say that some workers feel like members of the family, acting as role models to their typically developing children and as trusted advocates. Acknowledging and demonstrating respect for workers is a key retention strategy according to families.

Ways to Acknowledge Workers

• Remember a card or gift on birthdays/holidays.
• Comment on specific actions you noticed and appreciate.
• Tell them of your child’s fondness for them.
• Let them know that their own family should be their priority.
• Keep the refrigerator stocked with their favorite beverage.
• Listen to their personal stories.
• Share personal stories with them.
• Show flexibility.

In addition, periodically self-evaluate your own behaviors. Are you showing the home care workers respect, flexibility and support? Are your expectations realistic? Remembering that possibly no one will ever do things as well as you, the parent, and letting go of expectations that the worker can read your child’s every movement and cry is necessary for home care to work. If your home care experience is marred by frustration, tension and a chronic feeling of dissatisfaction, then it is time to step back and talk with a trusted friend or professional about the situation. Overall, home care should be an enhancement to your life; and if it is not, you should carefully review the issues.

Ways to Show Respect for Workers

• Thank them as they leave each day.
• Provide specific and timely feedback when they do something well.
• Build a relationship; show interest in them as people.
• Be realistic about the energy it takes to care for your child and make sure your expectations are fair.

"Be careful what you ask for; you may get it."

"In my life, I don't have anything that is confidential anymore. We have no privacy."

Tips and Tools

Create Your Own Home Health Care Book

Many families have created personalized home health care books for the providers who come into their homes. Here is a way to begin thinking about developing your own book.

Getting Started

Make time to organize your thoughts and information and plan for the creation of a home health care book centered on your child.

Begin to collect and save articles, pamphlets, equipment guides and add them to the pocket of your binder (e.g., nebulizer, suction, Hoyer).

You will need...

• 3-ring binder
• Paper
• Ideas
• Information
• Photos
• Plastic sleeves

Following are some suggestions of what you may decide to include in your book .

A "Snap Shot" of Your Child"

• Interests, likes, dislikes: Be sure to include information illustrating your child as an individual with his or her own personality. What are your child's favorite activities, books, movies and more?
• Health status: You may choose to include recent reports summarizing your child's health or write an informal statement about how your child is doing these days.
• Photos: Pictures of your child, important people in your child's life, and any other images that share information. For a child who is non-verbal, photos are an excellent method for promoting information exchange and story telling.

Health Summary or Description of Your Child's Condition

This is where you may include specific information on your child's condition. Easy-to-read definitions and descriptions will enable a new learner to quickly grasp an initial sense of your child's disability. If your child does not have a diagnosis, you can still include information on specific aspects of the disability (e.g., asthma, hypotonia).

Daily Schedule

A daily schedule will typically include waking and sleeping, information, times in and out of bed or using other equipment, times when food is given, times when the child is changed or bathed (a sample schedule is attached).

Medications

For a child on medications, a clear description of each medicine, dosage, time given and purpose are critical. Many parents and agencies also require a careful logging system to ensure precision (see attached sample).

Foods

Many children have dietary restrictions for a variety of reasons, including weight, allergies, history of aspiration and more. Parents need to be clear about what foods are to be given, when and how. Some foods may need to be prepared ahead of time and instructions for this are helpful to a new provider. If your child has special likes and dislikes for particular foods, this is also useful information.

Exercises and Therapies

If your child has specific exercises or therapies, the home health care book is a good place to keep the protocols. If a child requires range-of-motion exercises, a combination sketch or photo and description of the activity allows another person to follow-through (see sample).

Articles/Booklets of Interest

Most parents have collected favorite articles, poems, and/or booklets that they have found helpful. Sharing these with providers is a wonderful way to enhance understanding about your child.

Specialized Equipment Many children have equipment (e.g., lifts, wedges, balls, standers, suction machines, ventilators, oxygen, nebulizers) in the home. Often when a piece of equipment is initially purchased, it comes with a pamphlet describing the item. Parents can 3-hole punch these pamplets and put them in the home health care booklet. Or simply put the pamphlet in the binder's front or back pocket You may choose to take a highlighter pen and highlight the main information in each pamphlet.

Log Sheets

In addition to charting medications, some parents also like to keep track of all the child's activities of daily living. Log sheets can also be used intermittently as needed. For example, during and following a serious illness, a parent may want to closely track body temperature, respiration rate and frequency of coughs. Simple lined paper is also useful for the flow of open-ended information or story telling.

Using Your Book

Your book may now be used to:

• Introduce applicants to child's needs
• Train incoming providers
• Offer ongoing support and information to providers
• Establish communication loop with providers
• Ensure your child's safety
• Make it easier for you to leave your child in someone else's care

Emergency Information All new and existing home care providers should be absolutely clear on how to act in an emergency. A list of phone numbers or pagers and an order of whom to contact first is critical. Many parents carry pagers at all times so that they can be the first contact. A list of criteria for when to call 911 versus when to call a parent may also be delineated. In addition, this section should state where the fire extinguisher, flashlight and tornado-safety area are located in the event of a natural crisis.

A Sample Daily Schedule

Please note that this schedule is skeletal and is only to provide an example of what information is important. The schedule you create for your child would be much more warm, personal, refer to your child by name and include individualized details.

Welcoming the Day

• Greetings and connecting
• Wash face, hands
• Brush teeth
• Change Attend
• Help, to choose new clothes and dress
• Stretch arms, legs, feet
• 1 can of Ultracal, 2 ounces every 10 minutes
• Ask: Would you like to move to your wheelchair?
• Throw dirty clothes in wash, make bed
• Clean glasses and put them on

Take a Break

• Invitation to make choices about activities
• Make sure face stays clean and dry, use lotion if needed
• 12 ounces fruit or vegetable juice, 4 ounces every 15 minutes
• Check to see if a new Attend is needed
• Make sure clothing is clean and dry, change as needed
• Transfer out of chair
• Range of motion exercises including hip rotation
• Wash feeding items, keep area clean
• Choices about activities, checking in on the day
• Transfer back into chair

Lunch Time

• Choice: Time alone or help while you prepare lunch
• 1 can of Ultracal, 2 ounces every 10 minutes
• Wash up feeding items, keep area clean

Afternoon Rest and Relaxation

• Invitation to make choices about activities
• Make sure face stays clean and dry, use lotion if needed
• 12 ounces fruit or vegetable juice, 4 ounces every 15 minutes
• Check to see if a new Attend is needed
• Make sure clothing is clean and dry, change as needed
• Transfer out of chair
• Transfer back into the chair when ready

Closing the Day

• Transfer out of the wheelchair
• Assist with a large tub bath
• Brush teeth
• Examine skin for pressure areas
• Range of motion exercises, including weight-bearing
• Assist in choosing pajamas
• Prepare dinner: 2 cans Ultracal, 2 ounces every 10 minutes
• Straighten up room
• Clean up from dinner
• Pack up backpack and lunch box for the next day
• Dress for bed
• Cover with warm blanket

Medication Log Sheet

Record of Medications Initials of Person Providing Medication
Name:________________________ Initials_____
Name:________________________ Initials_____

All Medications
Name
Time(s) Given
Dosage
Other Information
Date
Time
Medication
Dosage
Notes

Drawing by Leslie Dickersin

Range of Motion Exercises

Low Back Rotation:
Gently bring one leg up toward her chest keeping her leg parallel with her trunk. Hold the other leg straight on the floor. Then gently cross her flexed leg over her extended leg. Repeat for the opposite side.
Do the following exercises when she is out of her wheelchair lying on her back on the mat. (The shoulder flexion and head rotation exercises could also be performed while she is in her wheelchair.) Do each exercise for 10 repetitions; do them slowly and gently working towards the relaxation of her tone.

Reflections for Caregivers

Take Time for Response
It is the germ of creation
Take Time to Read
It is the foundation of wisdom
Take Time to Think
It is the source of strength
Take Time to Work
It is the path to patience and success
Take Time to Play
It is the secret of youth and constancy
Take Time to be Cheerful
Valuing life brings happiness
Take Time to Share
Respect is the root of true happiness
Take Time to Rejoice
Joy is the Music of the soul
Take Time for Eight Matters of the Heart

by Ed Young

From MATTERS OF THE HEART by Ed Young. Copyright c 1997 by Ed Young. Reprinted by permission of Scholastic Inc.

Ten Tips to Take Charge of Your Life

• Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
• Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.
• Watch out for signs of depression, and don’t delay in getting professional help when you need