A Wicked Problem: Can Governments be Fair to Families Living with Disabilities?

• DOI: http://doi.org/10.1111/fare.12056
• Published date: 01 February 2014
• Author: Charlie Lakin,Sue Swenson
• Date: 01 February 2014

SUE SWENSON U.S. Department of Education

CHARLIE LAKIN U.S. Department of Education∗

A Wicked Problem: Can Governments be Fair

to Families Living with Disabilities?

Families provide priceless support to members

with disabilities. Without the support of families

the lives of most individuals with disabilities

would be diminished in comfort, independence,

opportunity, and caring relationships. Without

the support provided to individuals with dis-

abilities by family members, public expenditures

for nonfamily assistance would be several times

what is currently expended. In its responsibili-

ties to the well-being of individual citizens and to

the efficient and effective use of public resources,

governments struggle to accommodate the great

diversity among families in what they want and

what they need. Governments are challenged

in targeting limited resources to reach those

who need them most, in the amounts that are

most cost-effective, and in a manner that is most

beneficial to the family and its member(s) with

disabilities. The attention on support to families

is further complicated by changes in families and

their individual members as they pass through

lifecycles of changing relationships, expecta-

tions, aspirations, and capabilities. This article

offers a modest commentary on how in the midst

of such complexities our society can develop

fair, effective, and cost-beneficial approaches to

Special Education and Rehabilitative Services, 4604 Harling

Lane, Bethesda, MD 20814 (Sue.Swenson@gmail.com).

∗National Institute for Disability and Rehabilitation

Research, 964 17th Ave. SE, Minneapolis, MN 55414.

Key Words: Family, support, disability, policy, respite,

segmentation.

supporting families and their individual mem-

bers.

HAPPY FAMILIES ARE ALL ALIKE

Tolstoy famously asserted that happy families

are all alike and unhappy families are each

unhappy in their own way. His families struggled

for honor, love, and honest work in the face

of luxury and social stratification. Dostoyevsky,

while extolling the supremacy of Tolstoy’s work,

showed us miserable men, women, and children

struggling for bare existence and every crumb of

dignity and understanding in the face of crushing

poverty, illness, avarice, drunkenness, madness,

and disability. The reader may decide which

author provides a better depiction of families

and mankind.

Families with members with disabilities

have one thing in common: one or more of

their members has a disability. Yet they are

more different than alike. They vary in the

nature of the disability (e.g., sensory, physical,

developmental, psychiatric) and in its cause.

They vary in the severity and multiplicity of the

disabilities. They vary on other dimensions as

well. Some are poor, some are well-to-do. Some

live in urban areas rife with difficulty but replete

with public services including transportation.

Some live in rural areas with no access to

transportation or local necessities. Some families

have one parent. Some have two. Some have

more parents because they are blended families

with more than one household involved in care.

In some families none of the members is a

Family Relations 63 (February 2014): 185–191 185

DOI:10.1111/fare.12056