The notion of hiring a stranger to come into your home and care for your disabled child can be an unnerving task, but following simple guidelines, including exhibiting strong patience and instinct, can lead to a mutually rewarding arrangement.
As with most things, research will be your best ally. Internet research will lead you to numerous personal blogs detailing the experiences of parents in a similar situation. In many cases, you will be able to initiate an online dialogue and get answers to most of your questions and learn things you maybe hadn’t thought of.
The first decision involves where you are going to look for your healthcare worker. You may want to go through a qualified agency to provide you with someone or you may want to go the route of hiring an individual that works as a private contractor. There are pros and cons to each.
Whether going the agency or private individual route, always check the provider or licensee through your state Board of Nursing to ensure they are currently licensed to practice in your state and to learn of any disciplinary actions or complaints on their record. This can often be done online.
When using an agency, they should first send a representative to your home to assess your child’s needs and level of care required. From here, you will be assigned a case manager. A private contractor should also make themselves available for an in-home interview where it can be mutually determined if they can provide the level of care your child needs. In both cases, insist on references and follow up on them. Keep in mind that whoever you hire will not only care for your child, but need to accurately communicate with you and your child’s other healthcare providers.
Once you have contracted with someone for employment, expect to work with them for, at least, the first few sessions. Regardless of their credentials, they will need to be trained on the specifics of your child and in the manner you want things to be done. No two children or cases are the same.
It is wise to put all instructions in writing in an effort to minimize mistakes or confusion. The notes you provide should include:
1) All contact information for you, other members of your family and all other healthcare providers and emergency contacts
2) List of child’s likes, dislikes and fears
3) List of child’s favorite activities and rough time table of tolerance so as not to over-tire the child.
4) Description of child’s cognitive level and ability to communicate.
5) Detailed instructions on the frequency and method for taking vital signs, position changes, baths, diaper changes, linen changes and any other procedures your child requires.
6) Location in the home where important items are kept
7) Detailed instructions regarding medications
A good health-care provider needs to be proficient at their job, but also a comfortable fit within your home. Some of the things you should expect from your in-home provider:
1) Patient, respectful and compassionate interactions with your child. This should include speaking directly to them as often as possible regardless of their perceived ability to understand.
2) Diligence regarding disease control – including frequent hand washing and staying out of your home when suffering any contagious illnesses.
3) Punctuality, including advance notice of cancellations or late arrivals
4) Confidentiality. It’s not a bad idea to include a confidentiality clause in the contract you sign with your provider. Examples can be found on many legal websites.
5) Communication skills. Providers must be able to effectively communicate all pertinent issues with you (both verbal and written) and to the child’s other healthcare providers.
6) Attentiveness to detail – strict adherence to medication schedules, proper use and maintenance of equipment is essential
7) Undivided attention – when your provider is at work, they should not be using their mobile communication devices
8) Good end to day – part of the provider’s routine should be leaving the child, the work area and all equipment in its original clean and organized condition.
Your new in-home provider would be remiss if they did not have certain expectations of you as well:
1) Most children experience anxiety at meeting strangers. It is your responsibility to introduce your child to this new presence in their lives and help them feel safe.
2) A clean, safe, well-lit “work” area.
3) All disposable and non-disposable medical supplies, including feeding tubes, hearing aids and suction equipment should be in good working order, clean and well-organized
4) Make them aware of any special circumstances that may arise, such as seizure activity
5) Instructions on the use and maintenance of any adaptive equipment your child uses
6) Your schedule for when away from the home.
7) Healthcare providers don’t need to be subjected to your personal business. It may be your home, but it’s there place of work. Keep arguments and other personal business out of sight and ear-shot.
Your healthcare provider is there as an extension of your wishes and child care methods. Never allow them to dictate how they will perform their duties. In an optimum environment, you will build a rapport and relationship that will keep your child with cerebral palsy in fine health so that they will have a better opportunity to flourish in other aspects of their lives such as educational and therapeutic situations.