Murphy's Law is as familiar to all of us as the Law of Gravity. Al- though human services are not governed by the same types of laws, rules, or principles as physical sciences, there are some common themes that do allow us to humorously reflect on current professional practice. For the purpose of this paper, tour major laws and thirteen corollaries patterned after Murphy's Law have been postulated
The four major sections of the paper are: (1) definitions, (2) im- petus for chance, (3) barriers to family care, and (4) future. Each sec- tion will be prefaced by a law and each subsection by a corollary.
LAW #l: Human problems tend to be defined in terms that require professional solutions thus rendering them insoluble. (Definitions.)
This paper will not provide definitive answers to the question, what are family support services?" Det'initions of "social support," !Iservices,l! and `W'amily'f continue to be difficult for researchers, par- ents, and providers
Cobb (1976) defined social sup port as information exchanged at the interpersonal level which provides emotional support (care and love), esteem support (value as a person), and network support (mutual obliga- tion and understanding) . Support can occur in neighborhoods, family, and self'-help groups. Neighborhoods tend to provide short-term assistance. Families provide longer term support such as information, feed- back, guidance, help, rest, identity, and an emotional base. Self-help groups form because of a mutual problem or situation.
Various taxonomies of family services have been offered. For exam- ple, Bates (1983) suggested the following: o Subsidized adoption;
o Direct subsidies to families;
o Respite care;
o Training; and
o Technical assistance. Loop and Hitzing (1980) offer a more comprehensive and graphic represen- tation (Figure 1). (INSERT FIGURE 1) The common stereotype det'inition of family is "mother, father, and two children." The Bureau of Labor Statistics (1979) has published a cost of living index for Census regions based on a hypothetical urban family of four consisting of an "employed husband, age 38; a wife not employed outside the home; an 8-year-old girl; and a 13-year-old boy" (p. 21). In contrast, the Census Bureau has abandoned the term family and adopted the term household to denote the range of living arrange- ments that currently exists
In the background paper produced by Human Services Research Insti- tute (HSRI), the authors (1984) adopted a very traditional view of the family as a ?Ifundamental social or mating group f'ound within human so- ciety." HSRI included such words as "marriage," "ot'fspring,f' and "relations." Demographers suggest that society is moving away from these traditional concepts.
Figure 1: Model Array of Family Resource Systems and Support
Services for Handicapped Children and Their Families 3
Of greater importance to this paper are the t'unctions of the family delineated by the HSRI paper. The fundamental issue of family support programs is ~!who shall care for the members ot" the family, particularly those individuals with handicapping conditions?" This question leads to several others: o What are the conditions which allow one
t'amily to care for its handicapped mem-
ber and another to place the handicapped
person out of the home? " What are the reasons why there is family
support t'or mentally retarded persons
but not for Alzheimer's disease, head
trauma, or hundreds of other conditions
that place chronic stress on families? " Why do family support programs tend to
focus on children and not young adults,
middle-aged adults or elderly adults
with disabilities who might be living
in a household unit? " Is family support an anticapitalist
concept? Corollar~ 1.1: Service spstems uill occasionally stumble
over the truth, but most of the time, the s~stem uill move
on quickly. (Service goals.) What are the goals of family support programs? The goals differ according to perspective. The government's perspective is to care for the child and save money. The family's perspective is to receive nec- essary assistance to prevent out-of-home placement. For the person with a disability, it is not a goal if the term maximizing potential is not mentioned
The goal of providing stable t'amily support occurs in the unstable context of society. There are dozens of' political, economic, social, cultural, technological, psychological, and demographic variables 4
at'f ecting
1.
2.
3.
4.
5.
6.
7.
8
9.
10. . living arrangements: Family functions have shifted outside the household unit.
Marriage patterns have changed with delays in marriage
(Duvall, 1977).
Divorce has increased and is not regarded as a stigma.
Family authority has shifted to women.
Older and younger family members are treated differently
than in the past with care given outside the family.
The number and size of families have changed (Beck &
Bradshaw, 1976).
Individualism has replaced tamilism.
New types of households are formed consisting of one per-
son, more than one person not conventionally related, or
single parents with children especially female-headed
households (Bradbury, Bishop, Garfinkel, Middleton, G
Skidmore, 1977).
Women are participating in the work force in greater pro-
portions which affects fertility rate and the increased
demand for child care (McDonald & Nye, 1979).
Two-paycheck families have created a new level of con- sumerism (Bird, 1979).
President Carter initiated a series of state and national White House Conferences on the Family. The stimuli for such an initiative came from several statistics, according to Dworkin (1978): o Increase in juvenile crime;
o Increase in teenage pregnancy;
o Increase in suicide among children and
youth;
o Increase in physical abuse of children;
and
o Increase in domestic violence.
one of the purposes of the conferences was to define a national pol- icy on families that could alleviate the problems previously mentioned.
According to McDonald and Nye (1979), the problems in forming a national policy on the family include: (1) definitions, (2) unexpected conse-
quences ot' government actions, and (3) tax laws. There is also growing
interest in defining the domain of rights from government interventions.
The rights of families were describt?d in a special issue of the H&umd 5
Law Revieu ( 1980) : o Form a t"amily and marry;
o Childbearing decisions;
o Custody of children; and
o Upbringing of children while recogniz-
ing the child's constitutional rights
As expected, one group of policy analysts (Berger & Neuhaus, 1977) argue for less government intervention and increased reliance on t'ami- lies, neighborhoods, churches, and voluntary associations to address family issues. On the other side is the plea for more government assistance in the area of income and jobs (Featherstone, 1979). While no national policy on i'amilies has emerged, there seems to be greater recognition of the broader societal t"actors affecting families such as individualism, little government interference in private lives, and con-
sumerism. Corollary 1.2: All parents should give up their oun handi-
capped children, become foster parents for another handi- capped child, and at night, shift the children tick to the
wturd parents. In that wg, families can receive needed
services and keep their own children. (Service objectives. ) Brown, Johnson, and Vernier (1983) have det"ined objectives f"or in- come support programs, some of which are also appropriate for family support: 1. Adequacy: The program must allow every recipient to re-
ceive sufficient help to meet minimum needs. 2. Horizontal Eauitv: Those families in similar circum- stances should be treated similarly. 3. Vertical Equity: Families in different positions in the
income distribution are treated differently according to
financial position. 4. Target Efficiency:
the needs of those Plan and execute programs to meet
who are to be assisted.
5. Family Stability: Policies and benefits should encour-
age families to remain intact and avoid incentives toward f&nily breakup
There is little doubt that family support the objectives of adequacy, target efficiency, two objectives that result in problems in some horizontal equity. VERTICAL EQUITY: Point: Counterpoint: HORIZONTAL EOUITY: Existing
Problems: Those in greater need programs attempt to meet and family stability. The states are vertical and should benefit more than thos~ in lesser need. Why is family subsidy provided to "rich"
families when `poor !! f'amilies are on a
waiting list? Why isn't this program based on income? A "rich" family can
capped child out of
as a ?~poort~ family.
prevent out-of-home
less of income. place their handi-
the home as easily
The purpose is to
placements regard- Those with equivalent needs should re-
ceive equal benefits.
Some groups of needy families are ex- cluded, particularly if the subsidy is
designated for children with the most
severe handicaps. Some groups receive favorable treatment
over others (parents of mentally re-
tarded children compared to parents of
children with cerebral palsy, autism,
head trauma, and others). Geographic inequities exist in the United
States since 18 states provide family
support, and 32 states do not
In addi-
tion, states vary in how programs are
operated, the level of benefits, and the
standards of eligibility for benefits
There are several questions that remain unanswered regarding the
effectiveness of family support programs in meeting service goals and 7
object ives. These areas include: o IS there any evidence to suggest that
family support programs negatively
aff'ect the f"amily structure and func-
tion? o Does t'amily support help those families
already receiving income support, or
is family support a program for middle
class families? o Is family support designed to alter the
distribution of t'unds from state insti-
tutions to families? o Will family support be an entitlement
program assuring benefits to all who
meet the established criteria? o Will family support continue to be a
needs-based, limited service with ben-
efits rationed to those among the eli-
gible who are deemed most in need
according to some defined criteria? LAW+2: If pour handicapped child onl~ needs 10 minutes of assistance,
gou can onlg receive 24 hours of care, usuall~ out of the home. (Im-
petus for change. ) There are three major sets of resons why states adopted family support programs: (1) moral reasons (it is the right thing to do), (2) habilitation reasons (it helps families and children), and (3) fis- cal reasons (it is cost-effective). Corollar~ 2.1: When the governments remedies do not ?mtch
the problem, gou modifp the problem not the remedy. (Moral
imperatives. ) Several authors have described the empowerment of families because of legislation and litigation. Institutions and segregated placements are no longer accepted remedies given changes in philosophy, P.L. 94-142,
and judicial principles such as least restrictive environments (Paul C 8
than need. (Fam- Reviews (McCubbin & Figley, 1983) of the traditional research in the area of family stress reveals emphasis on typical topics such as: o Marriage, sexuality, parenthood;
o Divorce, step-relations;
o Careers, economic stress, retirement;
o Illness, death; and
o Natural disasters, war. Usually, the topic of handicapped children is combined with illness
A simple paradigm for understanding family stress was first ad-
vanced by Hill (1949) and has been modified since: A,B,C, -X. A = the event and related hardship interacting with B= c= x= the family's crisis meeting resources interact-
ing with the definition the family makes of the event
produces the crisis
The Philip Becker case provides an excellent example ot' the flexi-
bility of the paradigm since the natural and adoptive families faced
the same event (A) but had different resources (~) and definitions (c) of the crisis (X)
Another approach to assessing family crises comes from a set of
eight questions developed by Lipman-Bluman (1975) who asked whether 9
the crisis is: l--Internal vs. external?
2--Pervasive vs. bounded?
3--Precipitous vs. gradual onset?
4--Intense vs. mild?
5--Transitory vs. chronic?
6--Random vs. expectable?
7--Natural vs. artificial generation?
8--Perceived insolvability vs. solvability?
There have been several studies on the effect of handicapped chil- dren on families, particularly, structure (Fotheringham & Creal, 1974; Beckman-Bell, 1981; Paul & Porter, 1981; Willer & Intagliata, 1984; McCubbin, Joy, Cauble, Comeau, Patterson, & Needle, 1980; Turnbull, Summers, & Brotherson, in press), stress (Wikler, 1981; Shapiro, 1983), and coping (Wright, 1970; McDaniel, 1969; Neff & Weiss, 1965). Accord- ing to several investigators (Gruppo, 1978; Minde, Hackett, Killon, & Sliver, 1972; Heisler, 1972), families of handicapped children progress through stages similar to reaction to death: (1) shock, (2) disbelief, (3), rage, (4) guilt, (5) denial, and (6) adjustment.
As Farber (1979) observed, ttDespite the vast increases in SerViCeS to developmentally disabled people over the past 30 years, the major family problems remain the same." Loop and Hitzing (1980) admonish readers that "services focusing on supporting abled child in the natural home have finished other thrusts of deinstitutionalization. " the family and the dis- last when compared to Disabilities create financial hardships fdr families because of costs incurred for adaptive equipment, medication, therapies, and lost income due to caregiving responsibilities. Family subsidy can be help- ful in meeting these costs (Turnbull and Turnbull, in press; Patterson and McCubbin, 1983; Boggs, 1979; Moroney, 1981). Traditionally, however, 10
~)resources are available once the handicapped child leaves hornet' (Horejsi~ 1979). Moroney (1979) also observed that traditionally the state pro- vides substitute care and not supplemental care
Intertwined with the issue of family resources and capacity is the pattern of out-of-home placements. According to an early study of ad- mission, Saenger (1960) identified two factors leading to out-of-home placement: (1) level of mental retardation and (2) behavior problems combined with families' capacity to cope. According to Lakin, Hill, Hauber, Bruininks, and Heal (1983), 11.9 percent admissions and 30.0 percent readmission are related to family capabilities. TO prevent out-of-home placements, agencies must shift attention to the family. Lash (1983b) explained: . . . Agencies tend to t'ecus exclusively on the needs of the
developmentally disabled individual rather than looking at
the entire family system. . . . The first response of an
agency must be, ?!How can we keep yOUr family intact? (p. 19) Paul and Porter (1981) argued for an even broader understanding of the family: An isolated view of persons with handicapping conditions can
be superficial and inappropriate. No real understanding of
the deficits, assets, and needs of the exceptional person
can be achieved without comprehensive, in-depth attention to
the values, expectations, resources, and circumstances of
that person's social and physical environment. (p* 19) There have
intervention to ents' attitudes been several demonstration projects that focus on home prevent placements. These projects have changed par- toward institutionalization (Cianci, 1951, 1967); avoided large expenditures of money per client for out-of-home place- ments (Kinney, 1977; Pullo & Hahn, 1979); eliminated problem behaviors 11
of children at home (OfLeary, 1967; Allin and Allin, undated); and in- creased levels of confidence in handling children (Heit'etz, 1977). Of specific concern to this paper is the utility of family support programs. Since 1976, Minnesota has had a family subsidy program. It was authorized by Minn. Stat. 5 252.37, Subd. 4, and defined by DPW Rule 12 MCAR 5 2.019: The program shall be for those children who, at the time of'
application, are residing in Minnesota and (a) who are liv-
ing at home, or (b) who are residing in a state hospital or
in a licensed community residential facility for the mentally
retarded who, under this program, would return to their own
home. Those children living at home must also be determined
by the local board eligible for placement in a state hospital
or a. licensed community residential facility for the mentally
retarded. [12 MCAR 3 2.019, B(1)] Priority is given to families of' severely and multiply handicapped children who are experiencing a high degree of f'amily stress and show the greatest potential for benefiting from the program. The program provides grants to parent(s) in an amount equal to the direct cost of the services outlined in a service agreement. Grants are to assist in the payment of: . . . diagnotic assessments, homemaker services, training ex-
penses including specialized equipment, visiting nurses' or
other pertinent therapists' costs, preschool program costs,
related transportation expenses, and parental relief or child
car costs not to exceed $250 per month per family. (MINN.
STAT. 6 252.27, Subd. 4) In 1983, the Minnesota Developmental Disabilities Council sponsored an evaluation of the family subsidy program. A sample of 70 families was selected, and 38 families participated. 12
The following results were reported in the area of program useful- ness: Thirty-seven of the responses (97 percent) reported that the
Family Subsidy Program is of "great or very great help." One
family (3 percent) rated the program as being of "some help." Respondents indicated that the subsidy program assists in re-
lieving financial, psychological, and social stresses. Par-
ticipating families felt that the subsidy was of great or
very great help in the following activities: purchasing spe-
cial items needed by the child (n = 36, 95 percent); attend-
ing to the needs of the developmentally disabled child (n =
35, 92 percent); purchasing babysitter services or respite
care (n = 27, 71 percent); doing things outside the home,
such as going to movies or taking walks (n = 23, 61 percent);
doing things with other children in the family and their
spouse (n = 22, 58 percent); and attending to the needs of
other family members (n = 21, 55 percent). With regard to other dimensions of family functioning and
coping, comparison of respondents' perceptions of their sit-
uation before and after program participation leaves little
doubt as to the positive effects of the program. For exam-
ple, only two respondents (5 percent) said they were able to
purchase special items needed by the developmentally disabled
child to a great or very great extent before receiving the
subsidy, contrasted with 36 (95 percent) after receiving the
subsidy. Other purchases and activities were affected simi-
larly; only one family (3 percent) said they were able to
purchase respite care to a great or very great extent before,
contrasted with 27 (71 percent) after; attend to the needs
of the developmentally disabled child, 2 families (5 percent)
before, 35 (92 percent) after; and attend to the needs of
other family members, 6 families (16 percent) before, 21 (55
percent after. The subsidy was not perceived as having a great impact on
ability to keep up with household chores for 24 respondents
(63 percent) or ability to work outside the home for 14
mothers (37 percent). At the same time, respondents felt
that they did manage better along these dimensions after
they received the subsidy than before. While the program enables families to cope and function bet-
ter and to care for their developmentally disabled child at
home, the subsidy does not cover all of the expenses entailed
in the child's care. Almost two-thirds (n = 24) of the fami-
lies reported additional expenses in the categories covered
by the subsidy. These costs include: medications, educa-
tion, special equipment, baby sitting, special clothing, res-
pite care, special food, and transportation. 13
Corollar~ 2.3: Even after refined diagnos is, ttire is no
change in treatment. (Needs of disabled person.) As noted earlier, the HSRI summary (1984) defined several family
functions such as serving as an economic unit, providing care, and f.ran5- mitting social values. This list of functions was recently expanded by Turnbull, Summers, and Brotherson (in press) to include the following functions: economic, physical caregiving, rest and recuperation, So- cialization, self-definition, affection, guidance, education, and voca- tional
The range, utility, and benefits of family care can be expressed very simply: o Development at home is better (Poznanski,
1973); o A family provides social development and
emotional security (Schield, 1976); o Disabled children have a right to be a
member of a f'amily (Vitello, 1976); and o Habilitative family care includes care,
training, and supervision of the devel-
opmentally disabled person in a planful
manner (Horejski, 1979). In addition, a child with a disability may be in a family home be- cause it is the least restrictive environment. As Trace and Davis (un- dated) have operationalized least restrictive environment: When there is a need for intervention, the intervention
should be no more drastic than that required to meet the
needs of' the disabled person
To test whether t'amily care is restrictive, both liberty and de- velopmental potential must be examined. The Trace and Davis approach assesses whether the person with a disability is competent and is 14
prevented from performing the activity in the setting. There are three basic reasons for overrestrictiveness. First, a caregiver performs the activity for the individual. Second, a caregiver prevents the individ- ual from doing the activity. And third, the caregiver may require addi- tional training that is unnecessary for the consumer. CorollarU 2.4: In order to have a family support progmm,
you must first spend billions of dollars on bricks and mortar
in remote ruml areas so that you can rediscover the effi-
cienc~ of the family. (Fiscal imperatives. ) Over 100 years ago, there were fewer than 2,500 mentally retarded people in state institutions in the United States. The number increased to 195,000 in 1967 and has declined to 130,000 in 1982. In combination with the decline ot" state institutions, there has been a large increase in the number of community alternatives. From 1977 to 1982, the number increased from 4,427 to over 15,000 (Hill & Lakin, 1984)
During the same time period, the cost of providing state institu- tion services has continued to increase dramatically. In 1915, the annual per capita cost was $182; in 1978, it was $18,286. In Minnesota, the current annual cost is $45,000. In 1916, Cornell observed that un- til the cost of institutions was reduced to under $100, the public would object to segregation on the ground of expense (Wieck, 1980). In 1970, Baumeister said that `knore money is spent on the 5 percent of the men- tally retarded people institutionalized than the 95 percent who are not. Scheerenberger (1980) estimated that during the decade of the 1970s, the per diem rate increased over 45o percent
Most recently, Braddock (1984) analyzed federal and state expendi- tures for institutions and community services. Between 1977 and 1984, 15
the United States government spent $13 billion on ICF-MR (Intermediate Care Facilities for Mentally Retarded) reimbursement. Of that amount, 82 percent was spent on state institutions and 18 percent on community facilities. According to very rough calculations based on the HSRI sum- mary of family support programs, over $24 million was spent in 1982-1983 on family subsidy (excluding California). Compared to the billions spent on out-of-home placements, less than 1 percent of funding is desig- nated for family support
In 1982, there were over 60,000 children (birth to 21 years old) in out-of-home placements which is a reduction of" 30,000 children since
1977. The reduction is attributed to aging, reduced admissions, and transfers. According to the HSRI summary of' family support programs, there were 5,250 families by family support programs with an additional 11,548 families in Pennsylvania and an unknown number in California. In comparing the average daily costs of various options in 1982, there is a wide range of cost: TYPE OF PLACEMENT COST Family support
Board and room
Foster care
Personal care
Semi-independdent living
Group home'(1 to 15)
Group home (16 or more)
Nursing home
Public group home (16 or more)
Average out-of-home placement $ 8.33 (est.)
$15.97
$16.15
$17.05
$27.40
$38.31
$45.15
$49.81
$85.84
$61.89 The rising cost ot' residential placements has intensified the search for alternatives to out-of-home placements and the emphasis on families. While some argue that by focusing on cost, attention is 16
shifted from civil rights and humanitarian concerns, economics cannot be dismissed. LAw#3: Learning disability is to mental repartition as familg support
is to welfare. (Barriers to family care.) Will there ever be federal support of a national family subsidy program? Is the idea of more government programs out of date? Will there ever be another entitlement program? Will the existing entitle- ments remain untouched? CorollarU 3.1: In societg treat constants as variables.
(Societal barriers. ) It is difficult to predict dramatic shifts in government policies when constants are really variables. In reviewing events of the past three decades, let us recall what we thought were constants: o Marriage--no marriage--marriage;
o Baby boom--zero population growth--baby
boom baby boom;
o Big cars--little cars--big cars; and
o Low inflation--high inflation--low in-
flation
The adoption of family support programs is determined, in part, by the trendiness of the topic given the cyclical nature of society
There are authors who argue that helping families preserves human dignity (Featherstone, 1979), while others counter that a family is the responsibility of its members, not government (Berger & Neuhaus, 1977)
To the latter group, family support can be perceived as an anti- capitalist idea since those who do not participate in economic develop- ment should not receive benefits. In addition, benefits to people with 17
disabilities should not exceed what "working poor tt receive in benefits (Ozawa, 1982).
The Baby Doe cases have raised several questions about a society that wants children's lives saved but may not be willing to support' the child after discharge from the hospital. A New York Times editorial (1984) pursued the questions of support: A society that understandably wants doubtful cases resolved
on the side of life also has an obligation to those for whom
such a life may be extremely painful: the infants and their
immediate families. Pending amendments in Congress ask for
study of the best ways to provide federal financial support
for the treatment of disabled infants. But who will pay for
an adequate level of continuing care?
The specter of socialism rises when any large outlay of funds to serve more families is discussed. Some authors (Ozawa, 1982) argue that
that
home in a serving more families would be an uneconomic use of resources and other programs should be made more efficient to prevent out-of- placements.
CorolJar~ 3.2: You can fool all of the people some of the
time and some of the people all of the time, but gou cantt fool mthers. (Family barriers. )
In Australia, 116 mothers of handicapped children study published parents want prompt, faced the parents of by McAndrew (1976). The findings were interviewed
indicate that accurate information that is factual. The problems handicapped children are complex and call for on- going support (Jefferson S Baker, 1964; Kendall' & Calmann, 1964; Young- husband, Birchall, Davie, & Kellmar, 1970).
The strain on the family for physical care of the children was 18
considerable: The main brunt of the care was carried by the mother and prob-
ably accounts for the considerably bigger proportion of moth-
ers compared with t'athers who were in poor physical health.
(McAndrew, 1976, p. 244; Freedman, Fox-Kolenda, & Brown, 1977) The single largest expense was travel costs. Only a minority of the 116 t'amilies were experiencing financial problems. In Australia, the following types of assistance were mentioned: Many of the families who used their car would be eligible
for free travel vouchers from the State Health Department
if they were able to make use of public transportation. A
subsidy or tax deduction for traveling expenses would be
a help to these parents. Financial assistance for home con-
versions was needed by a small number. A government subsidy
would also assist these families. (Senate Standing Commit-
tee on Health and Welfare, 1971) In addition to the parental view, siblings are beginning to speak out. A search of the literature revealed little work on siblings, al-
though the need for professional aid for siblings has been noted by several authors (Carver, 1956; Caldwell & Guze, 1960; Graliker, Fishier, & Koch, 1962; Farber, 1963). Gaiter (1984) summarized views of several adult siblings. As one sibling recounted: Sharing the pain, the anguish, the shame and the guilt of
having a handicapped person is a family affair; it is not
just a parents! affair. Of particular concern to siblings is the lifelong care and responsi- bilities for the handicapped person. Several others offered their own personal accounts about responsibilities: o I may have passed up marriage a couple
of times because of my sister (Rita
Haahn, 52-year-old sister of Grace who
is 48 and mentally retarded). 19
Many ment, and o I feel guilty for saying that I really
didnft want the responsibility. Al-
though I have an older brother, it is
implied that I will inherit the care of
our sister (a 58-year-old woman whose
53-year-old sister is mentally retarded.
Their mother is 85 years old). o Although programs are accessible to
mentally retarded, few are accessible
to autistic individuals. I feel very
trapped because I know about all of
these services and they're not inter-
ested in people like my brother (Daphne
Greenberg, 21, whose brother is 23
years old). siblings expressed a desire to understand guardianship, place- how to deal with guilt. Corollary 3.2: The best fa?nilg subsidg one-fourth as uell as the administnztor
cal disincentives. ) program uorke only
sa~s it is. (Fis- In the survey conducted ot' Minnesota family subsidy participants, 34 families (89 percent) said they thought the program should be ex- panded to include young adults. One respondent, however, t'elt the pro- gram should not be expanded waiting to be served by the while there are families with young children
program
Respondents offered several suggestions to improve the application process, increase the program's publicity, and improve the benefits pro- vided. The suggestions included: o o o ? Yearly applications rather than every
six months; Optional phone renewal of the applica-
tions; Education of local social and health
services staffs about the program; Use parents to publicize the program; 20
o o Florida has Increase benefits for families with
greater needs; and Increase allowed benefits to include
long distance medical calls and emer-
gency respite care. (Minnesota Devel-
opmental Disabilities Program, 1983a) conducted two evaluations of' their family support pro- gram. Initial problems were noted with staffing and reimbursement sched- ule. In the second evaluation, the payment method remained a problem to families (Bates, 1983).
Corollary 3.4: For everp person do avoids institutionaliza-
tion, two people will be imprisoned--usually out of state.
(Residual policy biases.) In July, 1984, Times regarding two alized mentally ill a noted psychiatrist was quoted by the Neu York major social indicators--the number of institution- people and the number of prisoners. Lunde stated that in 1970, 400,000 mentally ill people were institutionalized and 168,000 people were imprisoned. Within 10 years, there were 147,000 mentally ill people in institutions and 300,000 prisoners. Does the shift in population reflect a residual policy bias of reinstitutional- ization?
As Moroney (1979, 1981) has described in several publications, there is competition among several groups (elderly, mentally ill, mentally re- tarded, chemically dependent, children, and others) t'or scarce resources.
In reviewing the policy biases that remain against family support, one of the
the desire
controlled largest concerns is that state of providing for needy persons
programs. With family support legislators are torn between and the fear of creating un- programs, legislators are faced 21
with several questions: o Who should receive benefits? o Should benefits be related to charac-
teristics of the family or level of
functioning of the child with a disa-
bility? o Can benet'its be coordinated with tax
treatment or tax policy? o Can family
nated with
programs? o Can family support benefits be coordi-
other income maintenance
support financing ever make great gains when competing against
state institutions anti well-established
community services and programs? *' Familg support program that require no professional tmining
toda~ will soon require certification, accreditation, annual national
survegs, fedeml gmnts, public service announcements, and a historp b~
Richard Scheerenberger. (Future. ) There is predictability in human service programs such as state in- stitutions, community residential t'acilities, day programs, and waivered services. The tendency is to professionalize a program; form a national organization that can splinter the Association for Retarded Citizens (ARC) even further; and require national surveys so that counts can be tabu- lated and progress can be proclaimed. The ultimate criterion is, of course, a historical account by Richard Scheerenberger published by the American Association on Mental Deficiency (AAMD). Federal involvement comes in the form of demonstration grants which usually results in dis-
semination of voluminous reports and taped publ'ic service announcements applicable only to the demonstration project. Can we prevent t'amily sup- port programs from becoming professionalized?
Corollarg 4.1: We can predict the number of famil~ support
22
programs. In even-numbered gears, there will be an even nwn-
ber of states with progm?ns. Given the current mte of de-
velopment, by the pear 2004, all state8 will have familg
support programs
Based on the careful work of Bates (1983) at the Wisconsin Develop- mental Disabilities Council, we have an annual status report on the num- ber and type of family support programs. Some simple estimates suggest that while family support programs are expanding, the rate of increase does not match move away from based adoption to the limited the need of families. It seems absolutely essential to the experimental or demonstration approach to a larger- of programs. The Medicaid Waiver may be one alternative state-supported, family support program. Further analy- ses will be needed to determine the extent of family support in the states because of the waiver
Corollar~ 4.2: The onl~ uay to change pa?udigms
late, litigate, agitate, and bu~y the dinosaurs.
The Minnesota Developmental Disabilities Council is to legis- published two pol- icy briefing documents in 1983 and 1984. In 1983, two paradigms were described: the consumer-powered system and the resource-powered system. In a resource-powered system, services are based on funding availability and a general estimate of need. Clients are placed depending on availa- bilityof slots with clients fitting the system. Inappropriate place- ments are common.
In a consumer-powered system, the clients' needs are assessed; case managers are brokers, advocates, and creators of services to meet indi- vidual needs. Evaluation is systematic and based on outcomes.
The resource-powered system is common in states when individual 23
needs must contend with perverse in the most restrictive and most Intermediate Care Facilities for fiscal incentives that favor placement expensive settings. In Minnesota, the Mentally Retarded (ICF-MRS) is the most common residential option. While $200 million is spent on ICF-MR t'acil- ties, less than $1 million is earmarked for t'amily support.
In 1984, the Minnesota Developmental Disabilities Council pursued a policy agenda including several goals in the area of supporting fami- lies: Increasingly, public policy supports the idea that the place
for people with disabilities to build their futures is in
the community. (p. 7)
A vision of the future must involve supporting communities to act responsibly, to be competent, to recognize and support the citizenship of people with disabilities. This vision of a responsive community in- cludes: " A community where children can grow up
as members of families; o A community where children and adults
can be part of loving and caring rela-
tionships; o A community where all children can learn
together and from each other; and o A community where people can turn not
only to community services but their
friends and neighbors for support.
At the federal level, President Reagan coqld proclaim a new initia- tive to move 13,000 children from state institutions to less restrictive settings. The approximate cost of out-of-home placement can be 8 to 16 times greater than family support program. While some children may be 24
in appropriate placements, others should be transferred without dumping and without hardship to families. The federal government could also consider helping children through , an allowance program regardless of" parental status or family income. At this time, 69 nations (28 European, 24 African, 2 Asian, 3 Middle East, 10 South American, Australian, and New Zealand) have family allowance programs. In Bolivia, there is a housing allowance, birth grant, nurs- ing allowance, burial allowance, and monthly cash payments. The posi- tive outcome of a children's allowance program is elimination of current income maintenance programs that regulate and coerce parents. If all children receive an allowance, there is no stigma because of handicap- ping condition. Traditionalists oppose children's allowances for sev- eral reasons: First, children's allowances, like any governmental interven-
tion in economic activities, would impede free competition
and eventually result in uneconomic utilization of resources.
Second, children~s allowances would conflict with the basic
principles of the capitalistic system, in which all are to be
rewarded, not according to their needs but according to their
contribution to the general economy. Third, children's allow-
ances would create a powerful drive toward socialism. Fourth,
if financed by progressive taxation, children's allowances
would reduce the capacity and the incentive for.the rich to
save and invest. This in turn would discourage innovation
and invention, which are real sources of economic progress,
and consequently, could adversely affect standards of living.
Fifth, for advance in economy, human beings should not have
excessive security but a balance between reasonable security
and reasonable exposure to the risks in life. (Ozawa, 1982,
p. 206) On the other hand, Thorsson (1968) argued that children's allowances are an: . . . ultimate right of every child irrespective of back-
ground, place of living, income of parents, and so on, to be
welcomed, to have an economically and socially secure child-
hood and adolescence, with equal opportunities for a good 25
start in life and equal access to educational opportunities
in order to develop his/her full potentialities. (p. 14) Finally, initiatives that states should consider include: o A checkoff on tax returns to "Save the
Children't similar to checkoffs for po-
litical parties; o Adoption of a version of S. 2053 at a
state level to place emphasis on smaller
living arrangements and alternatives to
institutions; and o Fund Individual Service Plans rather
than buildings and programs. 26
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