How to Provide Care at Home
Home. The scent of home-cooked meals and fresh clean linens. The sounds of children’s play and incessant chatter. The ongoing debate over homework and overdue chores. Sharing, caring, and giving. Responsibility. A place of belonging, developing, growing, and becoming. A place to safely fall asleep and energetically awaken. Home is where the heart of the family resides with unconditional love and support.
Home is where we develop into who we are and develop our capabilities. Our basic human needs are mostly shaped and met at home. The concept of basic human needs is largely attributed to the early works of Abraham Maslow and referred to today as the “Hierarchy of Needs.” They include:
- Physiological – basic sustenance for existence, including air, food, water, and shelter from elements
- Safety – a level of security and stability in health, morals, family, property, resources, employment, and socialization
- Belonging – feeling a part of a culture, a family, friendship, and intimacy
- Esteem – self-care, independence, self-esteem, confidence, purpose, achievement, contributor, and having gained (and provided) respect
- Self-Actualization – knowledge, growth, development, acceptance, purpose, and potential
Everyone, with or without disability, has the same basic needs. Those with cerebral palsy, or other impairments, have a need and right to the same opportunity to fulfill those needs. For some, a bit of creativity, assistive technology, adaptive equipment, a communication device, or modifications in the home or automobile may be required. The opportunity to socialize, recreate, and play is also vital for the development of friendships, emotional growth, socialization skills and lasting relationships.
Goals for Care at Home
The goals to provide care within the home are to provide every individual the opportunity to maximize their future potential, primarily through:
- Ability to self-care
- Acquire independence
- Participate in activities of daily life
- Attain quality of life
- Contribute to society
Home, school and social settings are training grounds for development. The teen years are the transition period when children develop into self-sufficient adults. Not all children are able to attain this level, but still, families are encouraged to optimize the child’s ability to function. At times, this will require support within and outside the home through helpful resources and assistance.
Barriers exist for those with disability or impairment. For example, stairs may need to be replaced by ramps. Hallways may need to be widened to accommodate wheelchairs. Knobs may need grips. Communication devices may be needed to provide voice. The goal is to reduce or remove barriers, thus allowing those with disability the same opportunities as those without disability.
Fear in some results in the tendency to shelter a child with disability and strive for or expect less the child’s potential. In treating children with special needs differently than other children, however, there is risk of developing an anti-social or dependent child with less potential; a child who may feel different, and likewise be treated differently, than others.
Goals for those with more severe disabilities — possibly multiple disabilities — can be modified in order to optimize an individual’s ability and level of functioning. The goal is to set realistic expectations by planning with medical and education specialists for a life plan filled with benchmarks of success.
Admittedly, it may seem a balancing act, as other family members, such as the child’s siblings, require opportunities to excel and grow, as well. All too often energies are spent on those with the special needs, while other family members seemingly sacrifice the attention and care. Relationships with spouses, family and the social network may become compromised as care giving can seem overwhelming and exhaustive.
Parents, legal guardians, and caregivers require support, guidance, and friendship. It is important to strive for physical and mental fitness, health and well-being. The ability to properly care for others depends upon it. Those who are single-parent providers often require assistance from family and friends as the task of caring for a child with special needs may require such support.
Need more information on how to organize your efforts to manage your child’s care?
Request MyChild™ Kit No. 422
The Cerebral Palsy Care Plan
Reaching Goals of Care at Home
The key to reaching goals of care at home is to provide the proper tools to ensure the child experiences opportunities similar to those of a child without disabilities. Helpful questions may include:
- How can I help him/her to accomplish this goal?
- What do we need to do to breakdown that barrier?
- Is there a service available?
- Is there a technology available?
- Is there a modification that would allow the child to do that?
- What skills does the child need in order to embrace the opportunity?
The goal, after all, is to embrace life with cerebral palsy, making it as barrier and obstacle free as possible so children have the tools, mindset, and the support they need. Often the most important role family and friends play in the life of a child is love, support, comfort, guidance, security, safety and opportunities to grow and excel.
Who is on the Home Team?
The home-based care team are those individuals within the immediate family support network. They include:
- Church members
- Community support staff
- Family members
The relationships with the people on the home-based care team are essential to the health and well-being of not only the child, but the entire family. They are the adult friends that offer support and guidance to the parents. They are the peers of the child with special needs, and even the child’s siblings. These individuals often provide unconditional love and support.
Tasks provided by home-based care team members may include:
- Childcare services
- Emotional support
- Feeding assistance
- Financial assistance
- Handyman repairs
- Unconditional love
Other common services required at home may include: