Yesterday, Angela Puhle, 56, pleaded guilty to charges of manslaughter; she and her husband, Harry, allegedly made a conscious decision to deny their disabled daughter basic care.

Kyla Puhle, 27, weighed just 12 kg (about 26.5 lbs.) when she died from dehydration and a lung infection in March 2011. Kyla, a quadriplegic, suffered a range of severe disabilities, including cerebral palsy and scoliosis of the spine. After being granted bail, Harry Puhle, a teacher aged 56 at the time, committed suicide in December 2011 by shooting himself with one of his registered firearms. Angela, a former primary school principal, remains on bail and will be sentenced in July.

The tragedy and poignancy of this story ultimately emphasizes the well-documented difficulties experienced by families caring for a disabled child.

Recent Studies

In a study published the same year as Kyla's death, psychosocial problems faced by parents and other family members were studied in 50 families with a physically disabled child, 50 families with a mentally retarded child, and 50 families with a healthy child. As reported in the British Journal of Medical Psychology, researchers measured social burden, marital adjustment, and maternal neuroticism by way of a semi-structured questionnaire, interviews, and standardized scales. The results indicated that families with disabled children perceived greater financial stress, frequent disruption of routine and leisure, poor social interaction, and ill effects on their physical and mental health, when compared to families with healthy children. Additionally, the neuroticism scores were also significantly higher and the marital adjustment scores lower in families with disabled children.

Another recent study conducted in the Netherlands, Psychological Functioning of Siblings in Families of Children with Chronic Health Conditions: A Meta-Analysis, found a significant small negative effect on siblings of children with chronic health conditions (CHC). Overall the siblings were found to be especially vulnerable to internalizing problems; moreover, siblings of children with highly intrusive and/or life-threatening CHCs appeared especially at risk for psychological problems. "Siblings may indeed suppress their emotions and feelings because they are reluctant to ask their already overburdened parents for the attention they really need," the authors wrote. "Quite worrisome is that we did not find support for the resilience hypothesis; siblings did not have more positive self-attributes than comparisons; they actually had less positive self-attributes." That noted, the authors found that variation in psychological functioning among siblings is considerable; self-esteem was more negatively impacted among older siblings than younger.

Another View

Not all researchers discover only bleakness in the lives of parents raising a disabled child, and one study in particular counters the prevailing theory. Exploring the individual experiences of families with disabled children, the researchers identified hope as a positive transformation and dynamic process that helped parents to reframe their lives. Nineteen families participated in this qualitative study recorded in The Journal on Developmental Disabilities. Most of the parents reported that raising a disabled child became a positive and strengthening experience for them. The study's findings also showed that a child with disability contributed to a parent's personal and spiritual growth and hopefulness as well as overall family stability. The support of family and friends enabled families to better meet the needs of a disabled child and, as a result, parents developed a strong motive to share and celebrate the rewards of their children's small gains with others. "On the other hand, service providers' and professionals' negative evaluations of the child's disability reportedly made parents feel hopeless for the child's future," the authors wrote.

Clearly, the psychosocial impact placed on a family may change over the lifetime of the family. As recorded in this study, one mother expressed these thoughts about the immediate aftermath of learning her child was severely disabled: "It was the most difficult time of my life. In the presence of others I used to feel myself strong but...while alone...I used to cry a lot...I felt myself stronger and stronger with the passing of days," she said.

A Growing Issue?

Although it is difficult to find exact statistics on parents raising severely disabled children at home, the number in all likelihood has grown over the past decade along with the progress of technology and medicine. Certainly, the number of parents raising autistic children, which was reported to be a 78 percent increase over the past decade, has risen in that period. And, in the past, a child who could not swallow or was prone to seizures would have been raised in an institution; now, with portable breathing machines and drugs to help reduce seizures, they can live at home. Add to that longer life expectancy as compared to previous generations. A child with mental retardation today has a life expectancy of 66 years, compared to 19 years in the 1930s.

According to The Arc, the oldest and largest advocacy organization for people with intellectual and developmental disabilities, many more persons with intellectual and/or developmental disabilities are living with family members today and are doing so for longer periods. Although The Arc notes better outcomes and enormous cost savings when compared to out-of-home options, the organization stresses this increasingly common living arrangement requires specialized family support. "For the first time in history, millions of people with intellectual and/or developmental disabilities are aging in the community. Over 700,000 people with developmental disabilities live with one or more parent over the age of 65," it says. To ease the eventual adjustment a disabled child will make after their parents pass, the Arc encourages parents to make a transition plan. The organization reports it is developing a program to give help and counseling for older caregivers.

National Support

Another organization, National Dissemination Center for Children with Disabilties (NICHCY), offers families information on disabilities of all kinds. Funded by the Office of Special Education Programs and the U.S. Department of Education, NICHCY serves the nation as a central source of information on disabilities in infants, toddlers, children, and youth. In particular, their State Resource Sheets will help individual families to connect with disability agencies and organizations in their area.

Sources: Vermaes IPR, van Susante AMJ, van Bakel HJA. Psychological Functioning of Siblings in Families of Children with Chronic Health Conditions: A Meta-Analysis. Journal of Pediatric Psychology. 2011.

Singhi PD, Goyal L, Pershad D, Singhi S, Walia BNS. Psychosocial problems in families of disabled children. British Journal of Medical Psychology. 2011.

Kausar S, Jevne RF, Sobsey D. Hope in Families of Children with Developmental Disabilities. Journal on Developmental Disabilities. 2003.

Kazak AE. Families with disabled children: Stress and social networks in three samples. Journal of Abnormal Child Psychology. 1987.

Breslau N, Staruch KS, Mortimer EA. Psychological Distress in Mothers of Disabled Children. American Journal of Disabled Children. 1982.