Alan took a deep breath before hoisting his growing son from the wheelchair into bed for the night. Alan’s back had been bothering him lately, and he was worried that it had to do with the constant lifting and shifting he did of his disabled son. Alan’s wife had already conceded most of that work to Alan because of her own increasing difficulty. Alan knew that his wife would soon not be able to contribute much at all, which further worried him. As he gave his son a kiss good night, Alan resolved to follow up with their care provider for training on lifting devices and methods. He knew that his family needed help, and he was more than willing to reach for it.
Disability
Families must deal daily, hourly, and intimately with the disabilities of their members. Family life can be challenging when all members are healthy and functioning at full capacity. Family life can be a lot more challenging when disability strikes a family member. Schools and workplaces have legal obligations to accommodate student and employee disabilities. That’s all well and good. But families don’t need laws to tell them to care for their disabled family member’s needs. Families must do so because of the family member’s complete dependence on the family’s care. Families also care for their disabled family member’s needs because of their love, devotion, and utter loyalty to them. Disability is in that sense both a challenge for the family and a revelation of the family’s reason for existing. If your family is caring for a disabled member, keep that healthy perspective of needing to meet a difficult challenge while appreciating how doing so reveals your family’s strength, courage, and character.
Types
The type of disability that your family member suffers can matter a lot to how your family manages it. Some disabilities require greater care than others. For instance, a child with hearing loss, for instance, may do well enough with hearing aids, sound amplification, and a little sign language from family members. But a spouse with dementia may require round-the-clock supervision with attendant care for every basic need. Other disabilities require changes in the home. For instance, a disability that causes loss of ambulation and wheelchair use can require a family to build access ramps, enlarge doorways, move living space to the main floor, and modify bathroom facilities. Other disabilities require changes in family practices. For instance, a disability that requires nutritional changes can mean different grocery shopping and meal preparation. You and your spouse need to be informed, sensitive, and aware of the type of disability your family member suffers and how accommodating that disability may require household changes.
Onset
The onset of a family member’s disability can be the most challenging and confusing part of leading a family through disability. The physiological processes that produce disability can progress slowly. Disability itself may manifest itself so slowly that a family hardly notices the diminishing capacity and struggles of its suffering member. In that sense, diagnosis of the disability and its underlying condition can relieve a family of the concern over the cause for the struggles. Yet that relief can be short lived if the condition is not reversible and is instead progressive. Reliable diagnosis, skilled treatment, and sound information about the prognosis can greatly aid a family in helping its disabled member adjust and manage. Sometimes, the biggest concern is simply not knowing what’s happening and what’s likely to happen in the future. Work diligently to get those answers, while reassuring the suffering family member that the family is fully devoted to care, support, and assistance. As devastating as it is, diagnosis of a severely disabling and progressive condition is the family’s time to shine, not to crumple. The suffering member and rest of the family may mourn the diagnosis, but all should simultaneously rally to the cause.
Medical
Medical diagnosis and treatment is indeed the first concern for a family to address with respect to the disability of its member. Many medical conditions causing disability are treatable and correctible, with the prospect for relieving the disability. The greatest shame would be if a family member had a treatable condition that the family did not address, leaving the family member disabled. Get the medical diagnosis and treatment your struggling family member needs to make the greatest and quickest recovery available. Disabling conditions can require more than visits to local doctors. Local doctors should be referring you to specialists when specialist evaluation is necessary. Follow through on referrals. If you are not satisfied with evaluations and recommendations, get second opinions. Do the research. Many disabling conditions have nonprofit organizations devoted to disseminating information to families who need guidance. Support organizations even exist for families of children with undiagnosed serious illness. Find the right advocates to help your struggling family member get the needed medical diagnosis and treatment.
Accommodations
Beyond addressing medical issues, the family’s next interest and obligation is helping the suffering family member accommodate the disability. Many disabilities need not be disabling, if properly accommodated. Your struggling family member’s medical care providers should be referring you to the disability and rehabilitation professionals who can recommend and supply or direct you to the appropriate devices, equipment, home modification, or other accommodations. Those professionals may need to see your disabled family member in your family home to determine the appropriate measures. Private insurance or public programs may cover the cost of those accommodations, or you may find charitable nonprofits providing such assistance. While learning of, acquiring, and installing the necessary accommodations can disrupt your home’s appearance and normal rhythms, your family should also find the accommodations to be a significant relief. Relief from the adverse impact of the disability is their purpose. If accommodations don’t immediately work, keep exploring and experimenting. Every disability, every family, and every home is different.
Services
Some disabilities benefit more from services than devices, equipment, home modification, or other accommodations. Physical therapy can benefit musculoskeletal disorders and neurological disorders, for instance. Occupational therapy can benefit bone fractures and other traumatic injuries, and chronic conditions like multiple sclerosis and cerebral palsy. Speech therapy can benefit stroke sufferers and address speech and language disorders. Educational services can address learning disabilities, developmental delays, and emotional and behavioral disorders. Help your disabled family member acquire the necessary services to diminish and relieve the disability’s impact. Families can also benefit from attendant and nursing services for the care of severely disabled members. Ensure that your disabled family member’s medical care providers are recommending appropriate services, and help your disabled family member obtain those services on a consistent basis.
Institutions
Some families reach the point where they are no longer able to accommodate a family member’s progressive disability within the home. In other instances, a family member may suffer a stroke, motor-vehicle accident, or other event that promptly causes severe disability that the family cannot accommodate in the home. In those instances, medical care providers may recommend hospital and rehabilitation facilities for the family member’s recovery. Once recovery services end, though, often after a period of thirty, sixty, or ninety days, the struggling family member may need continued institutional care if your family is unable to accommodate the disability at home. Institutional care, provided by private insurance or government programs, can be both a relief and challenge. The relief, of course, is to see your severely disabled family member cared for in an appropriate setting. The challenge, though, is not to get to have the family member at home. Maintaining a close and supportive family relationship during a disabled family member’s institutional care can be enormously important, especially if the disabled family member is sound of mind and missing being home. Families find ways to address that substantial need compassionately. Some families are, for instance, able to arrange temporary housing near the facility for family members to use during extended visits. Other families have members visit in rotating shifts and use videoconferencing and teleconferencing for more-frequent communication. Make the effort. Doing so is more than worth whatever price. Let your church, school, or workplace community help with home duties so that you and your spouse can maintain the family relationship with the family member needing the institutional care.
School
Your disabled child should receive appropriate accommodations and services to attend and benefit from public schooling. As already mentioned in a prior chapter, public elementary and secondary schools have obligations under the Individuals with Disabilities Education Act or IDEA law to refer a student suspected of having a disability for evaluation and recommendation for special-needs accommodations and services. The IDEA law’s goal was to restore to the regular classroom disabled students whom schools had previously isolated or warehoused in settings where they did not receive adequate instructional services or socialization. With your advocacy for these rights, your disabled child’s public school can be a place of special services and accommodations, where your child gets to experience peer interaction, environments, and activities that you cannot replicate in the home. Put these public commitments to your disabled child’s best benefit, for as long as they last, and you will have taken a big step toward improving your family life.
Workplaces
Your disabled family member also has a right under the Americans with Disabilities Act or ADA to an employer’s reasonable accommodation of disabilities. If your disabled family member is otherwise able to do the job with reasonable accommodation, then the employer should not be discriminating against your family member. Workplace accommodations can include ramps, lifts, and other facility modifications, or reading, hearing, or other assistive devices. Helping your disabled family member find and maintain gainful employment can greatly benefit the family member’s confidence, while significantly improving your family life. Put the workplace disability laws to their best effect, making the workplace another partner, like the school, in providing access for your disabled family member, confirming the devoted quality of your family life.
Spouses
The disability of a spouse presents special challenges to a good family life. As the above chapters have reinforced several times, the spouses are the pillars of the family. They lead, organize, care for, and provide for the family. Spouses tend to carry most and in some cases all of the burden, responsibility, and privilege of caring for family members, especially when the other family members are infant children unable to contribute meaningful services to the household. The disability of a spouse from employment and from household services can leave the other spouse carrying the full household load. Indeed, a spouse’s disability adds another load to the other spouse, who may have to arrange for and transport and accompany the disabled spouse to medical evaluations, surgeries, and therapy sessions, while obtaining medications and medical devices and equipment, on top of household, childcare, and employment duties. No spouse can handle everything when losing the employment and household services of the other spouse, and caring for the other spouse’s disability needs. Plan on getting substantial additional household help, whether from nearby family members, friends, commercial services, nonprofit agencies, charitable organizations, and your church, school, and work communities.
Reflection
Do any of your family members suffer from disabilities requiring accommodations or services? If so, do you and your spouse have a clear diagnosis and prognosis for the disability? Or do you need further medical investigation? Is the underlying condition treatable and the disability correctible? If so, is your disabled family member getting the needed treatment? Does your disabled family member have the accommodations necessary to relieve the disability so far as reasonably possible and practical? Would your disabled family member benefit from more services than your family member presently receives? If your disabled family member is a child, is your child’s school providing appropriate special-needs services? Do you need attorney representation to help you advocate for the legally mandated special-needs services? If your disabled family member is of working age, can your family member qualify for gainful employment with reasonable accommodation of the disabilities?
Key Points
Disability of a family member challenges and galvanizes family life.
The type and severity of disability determines how a family responds.
A disability’s onset can confuse and trouble a family in its response.
Medical care providers need to share clear diagnoses and prognoses.
Providers can also recommend appropriate remedial accommodations.
Services like physical therapy can also address and improve disabilities.
Some disabilities require institutional care beyond family capability.
Schools must reasonably accommodate special-needs students.
Employers must reasonably accommodate disabled workers.
The disability of a spouse presents special challenges warranting help.