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Chronically III Children in America 1 

National Council on the Handicapped Formulates 

a National Policy for Persons with Disabilities 8 

DOTProposes New Mass Transit Rule 10 

MR Institutions Face Possible Fund Loss 10 

Transition from School to Work 11 

The Human Exhibit 12 

Spotlight on Child Abuse and Disabled Children 12 

HHS Awards New Grants 14 

News Briefs 15 

Announcements 17 

NewPublications 18 



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Programs for the Handicapped 

CLEARINGHOUSE ON THE HANDICAPPED 

Office of Information and Resources for the Handicapped 

Room3119SwitzerBldg. 

Washington, D.C. 20202-2319 
Telephone; (202) 245-0080 



Nicholas Hobbs, James M. Perrin, Henry T. ireys, Linda 
Christie Moynihan, May W. Shane 

The following article has been excerpted from a paper, 
"Chronically III Children in America: Background and 
Recommendations." The excerpts focus on the back- 
ground and policy issues while the unabridged paper in- 
cludes many recommendations. 

The paper is a preliminary report of the project, "Public 
Policies Affecting Chronically HI Children and Their Fam- 
ilies," at the Center for the Study of Families and Chil- 
dren, Vanderbilt Institute for Public Policy Studies, 1208 
18th Avenue South, Nashville, TN 37212, telephone 
(615) 322-8505, The final report, The Constant Shadow: 
Childhood Chronic Illness in America, vv/7/ be published 
by Jossey-Bass, Inc., Publishers, San Francisco, CA in 
1984. 

Background 

Significance of the Problem 

Children who suffer from severe, chronic illness are a 
neglected group In our society. Their suffering, the heavy 
burdens they and their families bear, the human re- 
sources lost to us all are matters largely unknown to the 
general public. Chronically ill children live out their lives 
in a twilight zone of public understanding. As a conse- 
quence, our nation, ordinarily attentive to problems of 
children and families, has lagged in its response to the 
urgent needs of children with chronic illnesses. 

Eleven diseases representative of the severe chronic ill- 
nesses of childhood have been examined closely: juve- 
nile-onset diabetes, muscular dystrophy, cystic fibrosis, 
spina bifida, sickle cell anemia, congenital heart disease, 
chronic kidney disease, hemophilia, leukemia, cleft pal- 
ate, and severe asthma. The eleven conditions serve as 
"marker" diseases, that is, they have characteristics that 
make them representative of the total range of such ill- 
nesses. Considered separately, each disease is relatively 
rare and occurs In a small percentage of the childhood 
population. Taken all together, however, perhaps a mil- 
lion children are severely involved and another nine mil- 
lion have less severe chronic illnesses. In considering a 
million children with severe chronic Illnesses, we also re- 
fer indirectly to at least three milllion family members bur- 
dened with caring responsibilities, affected by anxiety 
and sometimes by guilt, strapped by unpredicted ex- 
penses and possibly economic ruin, and facing an uncer- 
tain future that often includes the premature death of the 
child. 

Chronically III Children as a Class 

Chronically ill children can be considered as a class for 
the purpose of organizing services and allocating re- 
sources. The special needs of severely and chronically ill 
children and their families cannot efficiently and effect- 
ively be met simply by extending to this group policies 



that are efficient for children with routine illnesses, with 
acute or even fatal illnesses, with stable handicapping 
conditions (such as mental retardation), or with mild 
chronic illnesses such as allergies, transient asthma, and 
minor gastrointestinal problems. 

For several reasons, there has been a tendency to regard 
each chronic illness separately, Among the reasons are 
the physiological diversity of the diseases, the variation 
in the expected length of life, and the diversity of treat- 
ments. A result is that each disease has Its corps of spe- 
cialists, its affiliation with specialty clinical centers, its ad- 
vocacy group, and its champions in the Congress and 
state legislatures, each competing with the other for 
scarce funds. 

From a policy perspective, however, the diseases have 
more in common with each other than they do with other 
illnesses of childhood. We emphasize that not always, 
but in general, severe chronic illnesses of childhood 
share the following characteristics. Most of the diseases 
are costly to treat. Direct medical treatment costs, includ- 
ing hospitalization, may run high, and long-term care may 
be costly, too: blood and blood products, insulin, syrin- 
ges, special diets, drugs, orthopedic devices, transporta- 
tion, long distance telephone calls, oxygen, control of en- 
vironmental temperature, glasses, hearing aids, special 
schooling, and nursing care provided professionally or by 
family members and friends. Most otthe diseases require 
care over an extended period of time; thus costs mount 
steadily. In acute diseases, costs may be high but for a 
short period. By contrast, severe chronic illnesses have 
both periods of brief high costs plus the continuing costs, 
never low, for a long period of time. The costs of these 
diseases may be so great that a family can be made 
bankrupt; insurance may be impossible to obtain; and 
employment opportunities for parents and family mem- 
bers may be severely curtailed. 

Most of the diseases require only intermittent medical 
care, at the time of diagnosis and the establishment of a 
treatment regime, at subsequent routine checks, and In 
periods of crisis. Thus the daily burden of care, day after 
day, week after week, year after year, falls on the family. 
Our society Is organized to take care of many kinds of 
handicapped people, young and old, but not the chroni- 
cally ill child. Formal resources for the dally oui-of- 
hospltal care of such children are almost nonexistent. 
The future course of all the diseases is highly unpredict- 
able. The uncertainty thus generated creates great psy- 
chological problems for the child and his family. 

Most of the diseases are accompanied by pain and dis- 
comfort, sometimes beyond appreciation by the normal 
individual. Furthermore, most of the diseases require 
treatments that In themselves are arduous, often painful. 

The Integration of medical care, not normally a problem, 
takes on serious proportions when severe and chronic Ill- 
ness of children is involved. The integration of primary, 
secondary, and tertiary care is essentially nonexistent. 

1 



;;<y care physicians uncommonly see a child with 

o f rhg marker diseases. There may be difficulties in 

K-nM cat.on and referral, in allocation of responsi- 

V,,- contmu:ng care, and for coordination among 

n c f o.rde:-3 and schools. 

-'/;i'-?3 provide treatmenl for sickle cell disease, 
(to not; some provide Ireatment for the complica- 
of d.abeies, others do not, thus requiring parents 
re floats enough to be informed to move to 
Ln!^ *hare (here are tertiary care centers or to 
rhjf nave poifcles providing assistance to children 
a?K-u<ar d'seasss. And our nation as a whole sim- 
not erov.de, at a cost manageable by most par- 
resources it fakes to treat a child with a severe 

- 



in Health Care and Public Program 



tr* 



Chronicity and Severity: Definitions 

A general definition of chronic illness is a condition which 
interferes with daily functioning for greater than three 
months in a year, causes hospltalization of more than 
one month in a year, or (at time of diagnosis) is likely to 
do so. 

While the meaning of chronicity can be rather readily 
agreed upon, defining severity Is a much more complex 
matter. There are simply no good reference points that 
find ready acceptance. For some of the chronic Illnesses 
here considered, there Is a strong Inclination among phy- 
sicians to refuse to assess severity at all, at least not on 
or 9 lca ' bis - F r example, either a child has 

and how W0JI ta 






r -03"- K In P rev enting some F 

,T-"'l* """Sina oihers under at least a measure of i r 

i-U. '. ' -ji ji*l/1 in ActnalFu s.,.,..- ..... Ir 



treatment techniques. 



! 9 to work through enliqht- 

dtsease; P f rass within the 



[0 de!9c! various 



can 



.'ment of 
/n t//ero making 
typing and coun- 
"'-- ^ 



'notion and sib,,ng 



p 

tons we propose empCze 
dseases In an effort to 
d'sease-orlented de ,n lons 
considering severity 
identify very different 
Children with th ' 



,o 

The de " n| - 

u lmpaots of the 
the "n^entlonal 

most im Prtant in 
that thess ^terla 
ohildren a "d families 









of their ; chronic "I!"" Wh WOUld have 
.. .** For almost all chSLT Survlve to ^"8 
f evidence of chanaln ' inJ ^ H " Iness es f there is Jit- 
o' new cases appearing n 1 I nce 7 that is - tne number 
Furthermore, there is e v J" ? p f k pulatio " of stable size 
in longevity have already oMunS? 2. St P tentia( 9 aln 

h " dren wit h chronic illnesses! 'I S ' the nuniber of 
"nesses is presently mainly de- 



pendent on the number of new children in the population; 
and with a stable (rather than growing) child population, 
the numbers of children with chronic illnesses will also be 
stable. 

About 10-15% of the childhood population has a chronic 
illness. Among chronically ill children, about 10% (or 
1-2% of the total childhood population) have severe 
chronic illnesses. With the marked decline in morbidity 
and mortality from infectious diseases among children, 
and with the increasing survival of children with severe 
chronic illnesses, the 1-2% have become a much larger 
part of pediatric practice. 

The Organization, Costs and Financing of 

Health Services for 
Chronically III Children 

Organization of Services 

Diversity and fragmentation characterize the organization 
of services for chronically ill children. There is tremen- 
dous variation in the care families receive, based on such 
characteristics as the interest of the specialists in an aca- 
demic center, the urban or rural nature of the community, 
and the organization of governmental services, especially 
Crippled Children's Services. In some areas, a broad va- 
riety of family support services are available; in others, 
available services are limited to medical and surgical 
interventions. 

Families often identify great frustration from the fragmen- 
tation of services. They may see one or more specialists 
a distance from their home; among the specialists, there 
may be disagreement about plans for the child. Especial- 
ly for children with multiple handicaps, arranging to be 
Monday morning in the cardiology clinic, Tuesday after- 
noon in the neurology clinic, and on Thursday, in the or- 
thopedist's office becomes itself a major management 
problem. 

Despite greater availability, access to adequate specialty 
medical services is a problem in some communities. Most 
chronic conditions of childhood are rare and thus commu- 
nity pediatricians and other primary providers, despite 
the quality of their training, may have little recent experi- 
ence with an unusual malignancy, severe renal disease, 
or hemophilia in their practice. Similarly, despite the qual- 
ity of nursing staff, the hospital with just a few hundred 
deliveries per year will have very little experience with 
conditions which occur in perhaps 1 in 10,000 live births. 
Not only may Identification be a complex issue, but refer- 
ral may be a problem as well. 

Access to non-medical services is highly variable. Some 
communities may have excellent, comprehensive pro- 
grams for children with specific health problems, such as 
the comprehensive hemophilia centers in some areas. In 
other locales primary care providers offer coordination 
which assures the availability of a broad range of non- 
medical services to families of children with chronic ill- 
nesses. The emphasis on medical and surgical care, to 



the neglect of other services for families, can have a 
great impact on a child's development and functional 
abilities. As an example, a child undergoing corrective 
cardiovascular surgery needs attention not only to his 
medical and surgical care but also to his schooling. What 
can be done to diminish his falling behind his classmates; 
what plans should be made for his activity when he re- 
turns to school; are home-bound teachers appropriate for 
a period of time? 

Such services can be provided in many ways. Yet the 
fundamental problem in providing many of them is the 
lack of reimbursement for the services. Genetic coun- 
seling, as an example, is often dependent upon federal 
research or service support, and with cyclical variations 
in the support, genetic services may come and go in a 
relatively brief period of time. 

Costs of Care 

For most children in the United States, health care costs 
are small. Average yearly health expenditures for chil- 
dren not living in Institutions were only $286.07 in 1978. 
This average figure, however, disguises a distribution 
that Is extraordinarily skewed. Most children incur mini- 
mal health care expenses; relatively few require care that 
costs an enormous amount. For example, only 5.4 per- 
cent of persons under 17, many of whom were chronical- 
ly ill, were hospitalized one or more times in 1978, at an 
average cost of $1 ,920. The rest of the childhood popula- 
tion had no hospital expenditures at all. There are also 
many chronically ill children in the 2 percent of the na- 
tion's population that uses over 60 percent of all Inpatient 
resources each year. 

The typical pattern of a high-cost childhood chronic ill- 
ness involves a series of out-patient treatments and hos- 
pitalizations over many years together with routine daily 
home-care or self-care procedures. This pattern gener- 
ates many obvious medical costs, for hospital and physi- 
cians, medications, lab and X-ray services, and often for 
such services as physical therapy or social work. Many 
costs not easily categorized or assessed are also gener- 
ated; these include transportation costs, extra telephone 
costs, costs associated with time lost from work or school 
(often referred to as lost opportunity costs), costs for spe- 
cial diets, and emotional costs associated with increased 
worry and stress within the family. For each illness the 
specific medical and social-emotional costs will differ, but 
for almost every family, both types of cost will be major 
factors in the financial picture. 

Though chronically ill children represent a segment for 
society for which health care costs are disproportionately 
high, information available on the costs and financing of 
services for these children is sparse. For example, no 
studies are available to enable comparisons across many 
illnesses and that also take account of the wide range of 
family needs related to the illness. Instead, most studies 
focus on specific Illnesses and generally on medical serv- 
ices, excluding other services equally relevant to care but 
often delivered outside of medical settings. 



Financing of Care 

The system for financing health care in this country is a 
potpourri of federal programs, state programs, and pri- 
vate insurance arrangements. The complexity of the sys- 
tem is particularly frustrating for parents with a child 
whose existence is dependent both on specialized medi- 
cal procedures and on general health services. While 
most chronically ill children have a large portion of their 
medical care supported by some third-party arrangement, 
there remain large gaps in coverage. For some families 
these gaps can be financially ruinous. We present below 
a discussion of the six primary sources of payment for 
health care (broadly defined) of children with chronic ill- 
ness: private insurance companies; disease-oriented vol- 
untary associations; Medicaid; state Crippled Children 
Service programs (CCS); special state programs; and 
out-of-pocket monies. 

Private Health Care Insurance. Approximately 75 per- 
cent of the nation's children are covered by some form of 
private insurance. Most children (68 percent of all chil- 
dren) receive benefits under group plans, usually cov- 
ered as dependents of employed parents. These general 
figures might suggest that most of the nation's children 
are adequately protected. A closer look, however re- 
veals several major shortcomings of private health care 
insurance, particularly in relation to chronically ill 
children. ' 

First, private health care insurance is actually medical 
care insurance. Private plans are designed to cover hos- 
pital and physician costs, some lab and drug costs, and a 
few additional services. They do not cover many costs 
that families with a chronically ill child will generate in- 
cluding costs of transportation, home renovations, com- 



A second serious drawback of private health care insur- 
ance involves the various exclusions embedded in most 
plans. 

Perhaps the most important limitation of private health 
care msurance ,s simply the fact that it does not cover 
many ^ Americans; ,t especially does not cover children 
who have Inrnabons In activity and who live in families 
whose moome ,s below the poverty line. Of these chid en 
(numbering about a million,, only 17.5 percent are cov 

o 1L P H V ate ! nsurance - Th * rest are either uninsured 
or covered under public programs. Furthermore the 
number of children, chronically il, included, who are not 
covered by pnvate insurance tends to increase subs.an 
telly during periods of high unemployment, when fam fe 
tow coverage under group plans and cannot afford the 
costly premiums of an individual plan. 



: those with end-stage renal dis 
,?V e <! eral and state government, 
all states to pay for certain services for 
and allows states to pay for any of an 



additional 27 services. Eligibility requirements, in many 
states, are tied to the nation's major welfare program, the 
Aid to Families with Dependent Children (AFDC) Pro- 
gram. In these states, to be eligible for Medicaid, a family 
must first be enrolled in the AFDC program. 

Some states have elected the "medically needy" option, 
an important one for chronically ill children. Under this 
option, families with dependent children or with one ab- 
sent, unemployed, or incapacitated parent can qualify for 
Medicaid even if the family Income is above the Medicafd 
cutoff point, but only if the family's income falls below the 
cut-off point when medical expenses are subtracted. 
Even in states that offer this option, actual implementa- 
tion has been spotty. 

Many chronically ill and disabled children living in low in- 
come families are not eligible for Medicaid. Forty percent 
of all the nation's disabled children in poverty are not eli- 
gible for Medicaid. Twenty-two states have Medicaid pro- 
grams that cover at least half of the low income handi- 
capped children; 27 state Medicaid programs do not 
cover even half of this population. If a low-income chroni- 
cally ill or handicapped child is eligible for Medicaid, it is 
likely that the program will pay for only some of the serv- 
ices that he or she will need. 

Crippled Children's Service (CCS). The CCS program 
started in 1935 and was the only major public source of 
support for the care of low-income chronically III children 
until the early 1960's, when Medicaid and a variety of cat- 
egorical programs began. The original legislation estab- 
lished federal grants for states that states would then 
match. 

rhHHT St ,I 9 D, 1 ' P ongress established the Maternal and 
Child Health Block Grant and in so doing removed all fed- 
eral statutory requirements for a state CCS agency. In 
ales, CCS agencies continue to exist because of 
legis atlon but they all have substantially less feder- 
>niaft foithnnnh * ot necessarily less state monies). In 
program still plays a major role in 
ill children. It sets and dissemi- 
, provides for a fairly broad set of 
from a wide range of in- 
CCS program represents an 
he organization and the financing of 
it is the only broad-based child health pro- 
care coin. M Ver b th S ' des of the child healtfl 



5 ave provlded much care to many 

- Ab Ut $28 million *> 

in 1979; of this amount - 31 
were federal 



covers 



arena 



we e 

peroem 
percent 



bv 
y 






Cystic Fibrosis Foundation spent $11.6 million in 1980; 
the Leukemia Society $3.8 million in 1980. 

These organizations also allocate varying amounts of 
money to medical services, patient education and train- 
ing. As a whole, they tend to pay for services that are not 
reimbursable within the usual system of care, such as 
special prostheses, recreational activities, or transporta- 
tion. There is little specific information available regard- 
ing how many children are served or how much is spent 
per child by the voluntary foundations. 
Perhaps the most important role that they play, however, 
is one of advocate. In the past they have supported state 
CCS programs, often persuading state legislatures to 
spare the CCS program. For this reason, these organiza- 
tions may be crucial actors over the next few years, as 
state legislatures exercise the freedoms given to them by 
the Maternal and Child Health Block Grant. On the na- 
tional level, they have often played a critical role in sup- 
porting Federal research expenditures in their areas of 
interest. 

Out-of-pocket expenditures. Regardless of the type 
and extent of coverage that parents may have for their 
chronically ill child, out-of-pocket expenditures can be 
high and unpredictable. Families with a child with asthma 
spent an average of 14 percent of family income on medi- 
cal costs. In a survey in 1980, the Cystic Fibrosis Foun- 
dation found that 20 percent of the respondents reported 
out-of-pocket costs greater than 30 percent of family in- 
come; more than half the respondents said that these ex- 
penses were greater than 10 percent of family income. A 
study of families with children with spina blfida revealed 
that the average out-of-pocket expenses were 12 percent 
of the family income. When income loss and nonmedlcal 
costs were included, out-of-pocket expenses were 25 
percent of family income. 

Spec/a/ state programs. Prior to the introduction of the 
Maternal and Child Health Block Grant, the federal gov- 
ernment had a series of categorical grants to states for 
child health programs, several of which related directly to 
chronically III children. The Hemophilia Treatment Center 
projects and the Genetic Disease programs are two ex- 
amples. Although the monies involved in these programs 
tended to be small, they often provided important seed or 
ancillary money for state-initiated model programs. In 
1980, state hemophilia centers, designed to provide com- 
prehensive care to patients living in an identified region, 
spent almost $8 million. In fiscal year 1979, the federal 
government appropriated $11.7 million to the Genetic 
Disease Program. 

These federal programs do not exist as Independent pro- 
grams any longer but there are many state programs, off- 
spring of the federal initiatives, that are continuing. In ad- 
dition, several diseases have associated state-Initiated 
programs. There are, for example, cystic fibrosis pro- 
grams operating in several states, developed usually 
from advocacy; efforts spearheaded by local chapters of 
the Cystic Fibrosis Foundation. There are few data on 
any of these state-based categorical programs, or on the 
number of children and families that they serve. Yet, In 
some states they represent an Important, albeit small, 



source of support for health care of chronically ill 
children. 

Principles for Public Policy 

Policy concerning chronically ill children should address 
the gaps between the special needs of the children and 
their families and the characteristics of the health care 
system. The project has identified certain basic principles 
which should underlie policy, regardless of specific or- 
ganizational and program characteristics. 

e Children with chronic illnesses and their families have 
special needs which merit attention, beyond that provid- 
ed to the health needs of able-bodied children. Improve- 
ments in health services in general will improve the lot of 
chronically III children, and policy development for chron- 
ic childhood illness should be integrated with other devel- 
opments in national child health policy. Nonetheless, the 
special needs common to most children with chronic im- 
pairment will continue to need special attention in public 

policy, 

Families have the central role in caring for their own 
members and the goal of policy should be to enable fami- 
lies to carry out their responsibilities to nurture their chil- 
dren and encourage their most effective development, 
o Services should be distributed in an equitable and just 
fashion, specifically excluding from the distribution for- 
mula such nonfunctional characteristics as race, sex and 
socioeconomic class. 

Policy should ensure that a broad array of services is 
available to families with chronically ill children beyond 
the usual medical-surgical or health services. 

Policy should encourage professional services of a 
highly ethical nature. Key elements include truth telling, 
confidentiality, maintenance of dignity and respect for 
family preference, professionals' recognition of limits of 
their own effectiveness, and emphasis on collaboration. 

Chronically III children should stay on task in school to 
th.e greatest degree possible. Schooling is the main occu- 
pation of young people, and the interference of illness 
and its treatment with educational activities should be 
diminished. 

The public commitment to sound basic research has re- 
sulted in tremendous advances In the health of chronical- 
ly ill children. Policy should encourage the continuation 
and expansion not only of biological research, but also of 
psychological, biosocial and health services research re- 
lated to chronic illness In childhood. 

Issues to be Considered for Change 
in Existing Policies and Programs 
Issues: Organization of Services 

The specialization that has Improved the medical out- 
comes for chronically III children has resulted, Ironically, 
in fragmentation of medical services. The lack of coordi- 
nation of services, not normally a problem In the care of 
children with acute illnesses, takes on serious propor- 
tions when" there Is severe chronic illness. 

The diverse providers who treat an Individual child In- 
frequently coordinate their efforts. Caregivers may 



change over the long haul of Ihe illness and its often 
complex treatment. Families often lack supportive coun- 
seling in the care and management of the child with 
chronic illness. 

" Public programs such as those supported by the Crip- 
pled Children's Service, Medicaid and the federal re- 
search agencies, provide many essential services to 
chronically ill children. Yet they often favor the provision 
of high technology services (usually at high cost) and 
neglect relatively the broad base of services needed to 
maximize child functioning and family potential. 
Issues; Costs and Financing of Services 

Children with chronic conditions, particularly those with 
functional disabilities, require much greater than average 
use of hospital and ambulatory care. In 1977, chronic 
conditions accounted for 36 percent of total hospital days 
for all children less than age 15 in the United States. Sim- 
ilarly children limited in activity had greatly increased use 
of hospitals and visited the doctor more than twice as 
much as other chronically ill children, 

Public programs account for half of all expenditures for 
the care of chronically disabled and chronically ill chil- 
dren. Clearly the combined effect of simultaneous reduc- 
tions in these programs Medicaid, Medicare and the 
Maternal and Child Health Block Grant (Crippled Chil- 
dren's Service) is very serious for chronically ill 
children. 

The distribution of payment for the medical care of 
chronically ill children is capricious. There is great varia- 
bility of financial coverage by income, condition, severity 
type of services and geography. The gaps in coverage 
are of several types: 

-Gaps in benefits. Many programs fail to reimburse 
for services used frequently by chronically ill chil- 
dren-transportation, social services, home care ma- 
terials, and genetic counseling. 

-Gaps in populations covered. 10% of all children 
with functional limitations have no insurance, public or 
private, and 20% of low income children with function- 
al limitations are uninsured. 

-Gaps in public programs. Medicaid covers only 25 
percent of the disabled child population and only about 
60 percent of disabled children below poverty State 

foTh, in , M ^ aid e ' igibility and sc P e of 
for disabled children is tremendous. 



/""*OG ' 

u ~" "wn L/OO programs in num- 

Ders of children served, generosity of state programs 
and conditions eligible for treatment. The Supplemen- 
al Secunty Income program, another important feder- 
al program for the disabled population, covers few 
children; only 5% of SSI beneficiaries are children. 

programs. The role of private volun- 
in financing care for disabled 
"insurers of last resort." 

"* * r e not covered by private 
1ren are almost twice as 
is coverage. While pri- 
M all children, it does 



Issues: Schools 

Education serves a number of important functions in all 
children's lives, and its significance for children who have 
special problems cannot be overestimated. Many chroni- 
cally ill children evidence no unusual learning problems 
but many require medical and physical accommodations 
to participate in school. Under P.L. 94-142, they need 
"related services" without needing "special education"; 
yet by definition there can be no related services without 
special education. 

Chronically ill children may need specialized instruction 
(e.g., vocational and career preparation, or even adaptive 
physical education, nutrition, and care of appliances) in 
addition to instruction in traditional academic areas. 
These needs are considered by many teachers and ad- 
ministrators to be outside the purview of the public 
schools. Professional preparation programs for handling 
medical matters in the classroom are unavailable for the 
most part. 

Teachers' attitudes regarding expectations for academ- 
ic achievement by chronically ill children often result In 
exaggerated deference to the medical implications of a 
child's handicap. The teacher, the parent, and the physi- 
cian may have different and sometimes incompatible 
goals for a chronically ill child. 

Development of plans for children with special health 
needs is limited too often by calling for services that are 
available already in a school system rather than for serv- 
ices the child actually needs. Costs to local education 
agencies, which have assumed the provider functions 
are cited as a deterrent to provision of a broad range of 
health services that may be needed. 

A major educational problem of chronically ill children 
is frequent or occasional interruption in school attend- 
ance, from prolonged hospitalization, regular weekly 
^eatments, or unpredictable three or four day absences. 
Current home and hospital school programs, often the 
only means of providing educational services to sick stu- 
dents, are characterized by great diversity in rules, re- 
quirements, and quality. Rigidity in absence requirements 

fLh 9 ? y f r h me P r 9 rams and brief length of 
teacher time on a weekly basis (most states require only 

i Thl n UI 3 f er W69k) " lustrate some of the Problems. 
The need for supportive services in school complicates 
educational placement and programming decisions for 
cnronicaily ill children. Service needs may include special 

diseas I* 3 W ' th 3Sthma ' dlabetes - or advanced 

cal h^nrflinnT 8 w j tl y heumatold arthmfsrs^c^physt 
dllnh 9 (for Students wlth s P lna blflda or muscular 
and ^^^^ Haison i services, counseling, 



Schools have limited health services for all children 
and few education authorities have developed and 

2?cM polici ? and w 

for cnnaren with special needs. 
Chronically ill children in school have qreat need for 
and "PPortunllto. to e^tnce n " 

Some of the obstacies to 



erratic attendance patterns 



maladaptive social behavior 

embarrassing side effects of specific diseases 

isolation due to equipment needs or geographic lo- 
cation. Perhaps the most important obstacle is the 
unavailability of support for parents In coping with 
chronic Illness. 

Issues: Research 

The dramatic Improvements in the treatment of many 
chronic illnesses in the past quarter century have in large 
part come as a result of a sizeable investment in basic 
blomedlcal research, mainly through the National Insti- 
tutes of Health. 

Support for basic biomedical research has plateaued in 
the past few years, diminishing the rapid growth In new 
knowledge characteristic of the previous two decades. 
Support for basic research In other disciplines critical to 
the needs of families with chronically III children has been 
far less generous; Investment In behavioral sciences re- 
search represents a minimal percentage of the NIH effort 
in chronic Illness. Even less support has been available 
in such areas as health services and nursing science 
research, 



Issues: Training of Providers 

* Most health providers, regardless of discipline, have 
limited experience with chronically ill children during 
training. Pediatricians, health professionals with perhaps 
the greatest direct experience with childhood illness, are 
mainly exposed to the acute exacerbations of chronic 
conditions and only occasionally to the long-term prob- 
lems and family aspects of chronic childhood illness. 
Public health practitioners provide leadership of Crip- 
pled Children's and related programs. Yet their training is 
often divorced from the places where chronically ill chil- 
dren and their families seek health care. The separation 
of public health people from the clinical realm has led to 
some of the fragmentation of services for children and di- 
minished the likelihood of effective public-private collabo- 
ration In program development. 
Faculties of key professional schools (e.g., medicine, 
nursing, psychology, social work) rarely include members 
whose academic focus has been the broad problems af- 
fecting families with chronically ill children. Faculties may 
include many disease specialists, but rarely generalists 
interested in chronic childhood illness, its coordination or 
family implications. 



The National Council on the Handicapped has developed 
a National Policy for Persons with Disabilities with the 
participation of members of the disabled community, gov- 
ernment, the service provider professions, and the pri- 
vate sector. Drafting meetings were held in each of the 
fifty States and the District of Columbia, in addition to ex- 
tensive mail, telephone and computer communication. A 
copy of the policy statement was sent to President Rea- 
gan on August 29. 



Full text is provided for the 22 principles set forth in the 
Council's national policy document, but only excerpts o 
the text elaborating on each principle are included, Read 
ers interested in obtaining the entire document or want 
ing to comment on it should write directly to: Nationa 
Council on the Handicapped, Mary E. Switzer Building 
Room 31 16, 330 C Street, S.W., Washington, DC 20202. 



1. AREAS OF RESPONSIBILITY: Laws, regulations 
policies and programs which enable people with disabili- 
ties to achieve maximum independence, self-reliance 
productivity, quality of life potential and equitable' 
mainstream social participation shall be initiated, funded 
administered and promoted by government and the pri- 
vate sector. 

The Federal Government has significant, continuous 
responsibilities to initiate, fund, administer, coordinate 
and regulate effective, socially and fiscally responsible 
programs which are designed to assure disabled peo- 
ple of all ages uniform services in all parts of the na- 
tion and full and productive participation in the 
mainstream of socfety. These responsibilities shall be 
fulfilled in such a way that state and local efforts to 
meet particular, often unique, needs are supported 
and facilitated rather than restricted and hindered. The 
Federal Government further has primary responsibility 
to guarantee and enforce the rights of disabled people 
according to the letter and spirit of the United States 
Constitution and of applicable laws and regulations. 

2. EDUCATION: Free and appropriate public education 
rn the most productive and least restrictive environment 
shall be avaiiable to all disabled children and adults. 

Educational programs should be operated principally at 
the state and local levels, with regulatory, coordinating 
and fiscal involvement by the Federal Government as 
necessary to guarantee the basic rights of disabled 
persons, including Individuals with severe disabilities 
to free, appropriate, equal and integrated educational 
opportunities. 

3. ATTITUDES; Realistic, positive perceptions of disa- 
bility and affordable, productive approaches to the prob- 
lems and potential of disabled people should be effec- 
tively communicated to all citizens by all educational and 
mass communication media. 

The communication of realistic, progressive percep- 
tions of the problems and potential of disabled people 
ehA " w *" finely Included In the curriculum at all 
ic and private education, 

=D PERSONS: Dis- 



National Policy for Persons with Disabilities 



abled persons, to the maximum extent possible, should 
have the principal responsibility to solve their own prob- 
lems and fulfill their potential. 

Disabled individuals should play leading roles in 
creating, making policy for, administering and di- 
recting public and private disability-related programs 
at the international, national, state, local, and individu- 
al levels. 

5. EMPLOYMENT: Employment and productive Involve- 
ment of Individuals with disabilities should be effected In 
all major functions of society, including at policy-making 
and administrative levels, and In disability-related service 
programs. 

A mechanism should be established to link disabled 
job seekers with available positions locally, state-wide 
and nationally, and to appraise employment trends for 
more effective vocational planning. Disabled people 
should receive equal pay for equal work. 

6. DEMOGRAPHIC INFORMATION; Accurate demo- 
graphic information in regard to disabled people and their 
needs should be developed and updated on a regular 
basis. 

7. SINGLE POINT OF ENTRY: A single point of entry 
for Information, referral, advocacy and counseling should 
be available in every community. This entity should be re- 
sponsible for offering to each disabled person compre- 
hensive information in regard to an efficient, unbiased 
continuum of human services delivery systems. 

Such information, referral and counseling entity should 
be operated by and through the cooperation of state 
and local government and/or the private sector, with 
certain coordinating, guidance and regulatory services 
provided at the federal level. 

8. LAW: Government and the private sector should co- 
operate to develop a comprehensive, Internally unified 
body of disability-related law which guarantees and en- 
forces equal rights and provides opportunities for individ- 
uals with disabilities. 

These could include and would embody the spirit and 
intent of Title V of the Rehabilitation Act of 1973, P.L. 



93-112 as amended; of the Education for All Handi- 
capped Children Act, P.L. 94-142; and of the Develop- 
mental Disabilities Assistance and Bill of Rights Act, 
P.L. 94-103; and shall be vigorously and efficiently en- 
forced. Congress and the executive branch should act 
forthwith to include persons with disabilities in the Civil 
Rights Act of 1964, the Equal Opportunity Act of 1972 
and other civil rights legislation and regulation, In mat- 
ters of fundamental human rights, there must be no 
retreat. 

9. ACCESSIBLE COMMUNITIES: Government and the 
private sector shall encourage and cooperate with initia- 
tives to establish efficient, architecturally and 
communicatively accessible, fully Integrated communities 
and services which utilize the available psychological, 
social, economic, architectural and technological knowl- 
edge to make the best our culture has to offer efficiently 
and cost effectively available to all people. 

Access to public and private facilities and programs 
should be according to a comprehensive, equitable, 
uniform national code, which includes mechanisms for 
vigorous enforcement and which does not Impose 
counterproductive requirements on individuals and 
organizations. 

10. FISCAL RESPONSIBILITY: Disability-related pro- 
grams shall be conducted with fiscal responsibility and 
sound management principles. 

11. INDEPENDENCE INCENTIVES: Disincentives to 
employment and to full social involvement shall be re- 
placed by a comprehensive system of independence in- 
centives and investments In the productivity of persons 
with disabilities. 

Possible Incentives Include new and increased tax de- 
ductions, tax credits, subsidies and guaranteed and/or 
low interest loans for Individuals, families and organi- 
zations making investments which increase the pro- 
ductivity of persons with disabilities. 

12. RESEARCH: Productive, coordinated research in the 
area of disability and the development of efficient, cost 
effective, independence-oriented technology and service 
delivery should be promoted, funded and made available 
for universal utilization by government and the private 
sector. 

The Federal Government should take the lead in 
promoting and coordinating such activities, and in 
ensuring that appropriate incentives are provided and 
adequate funds are allocated. 

13. PREVENTION: All citizens should be encouraged 
and assisted in their efforts to prevent and to minimize 
the negative effects of primary and secondary disability, 

The resources and technology are available for the 
United States to mount an effective national program 
to promote better disability- related and health educa- 
tion and to prevent accident and illness. In order for 
such an effort to be successful, the cooperation and 
coordination of the services and activities of many In- 
dividuals and agencies in the public and private sec- 
tors are necessary. 



14. COORDINATION: Effective mechanisms to plan and 
coordinate government, private and voluntary disability- 
related activities should be developed at the federal, 
state and local levels. 

The very great potential of America's disabled citizens 
will not be fulfilled until disability-related activities are 
planned and executed as a coordinated, Integrated 
unity. 

15. EVALUATION: Guidelines for policy and program 
evaluation systems should be established for monitoring 
and assessing the effectiveness of disability-related 
programs. 

16. PRIVATE SECTOR INVOLVEMENT: Private sector 
involvement in the development of effective solutions for 
the special problems of disability should be encouraged 
and increased. 

17. VOLUNTEERS: All persons, including people with 
disabilities and their private organizational and individual 
supporters, should be encouraged and assisted to partic- 
ipate on a nonpaternatlstic, voluntary basis in public and 
private efforts to enable disabled people to achieve their 
maximum quality of life potential. 

18. QUALIFIED PERSONNEL: An adequate number of 
qualified personnel should be trained at all levels to pro- 
vide more effective services for disabled people. 

19. CONTINUUM OF SUPPORT SERVICES: Govern- 
ment and the private sector shall develop, establish and 
support a family and community based continuum of resi- 
dential, counseling and support services which serve as 
usable alternatives to traditional long term care institu- 
tions and make a broad range of affordable, independ- 
ence and productivity oriented options available to every 
disabled person. 

20. RURAL AREAS; The unmet needs of disabled per- 
sons living In rural areas shall be examined carefully, and 
appropriate services shall be developed, funded and exe- 
cuted by government at all levels and by private sector 
.entitles. 

21. ETHNIC AND SOCIAL MINORITIES: Government 
and the private sector must cooperate to ensure that ade- 
quate services and opportunities are available to dis- 
abled members of ethnic and social minorities. 

22. INTERNATIONAL COOPERATION: Government and 
the private sector should cooperate to support and learn 
from the efforts of the world's more than 500 million per- 
sons with disabilities as they strive to achieve their maxi- 
mum quality of life potential and equitable mainstream 
social participation. 

Working Together for an Accessible Society 

Optimal solutions for disabled people will require coop- 
erative working relationships among all citizens and 
groups including individuals, families, communities, 
and private sector and all levels of government and re- 
sponsible, positive, unified advocacy based on the uni- 
versal human values which we all share. 

9 




The Department of Transportation (DOT) has published a 
notice of proposed rulemaking (NPRM) intended to en 
sure the provision of transportation services to handi- 
capped persons in DOT-assisted mass transit programs 
without imposing undue cost burdens on recipients The 
proposed rules would carry out Section 504 of the Reha 
bihtetfon Act of 1973 and Section 317( C ) of the Surface 

^ N 



How to ensure the provision of adequate public transpor 

portation Assistance Act directs the Department to pub- 
ish a new regulation that includes "minimum criteria for 
the provision of transportation services to handicapped 
and elderly individuals," and requires that the rule pro- 
vide for public participation in the establishment of pro- 
grams to provide services for handicapped persons and 
tor DOT monitoring of recipients' compliance. 

Under the new NPRM, a recipient could meet its obliga- 
tlons for service to handicapped persons in three basic 
ways. It could make 50 percent of its buses accessible 
{e.g., through the use of lifts), it could establish a para- 
transit or special services system (e.g., a "dial-a-ride" 
van system), or it could establish a mixed system that 
would combine elements of accessible bus and paratran- 
sit service. The NPRM would not require existing subway 
systems to be made accessible. 

Whatever kind of system the recipient establishes the 
system must, subject to the "cost cap" described below 
meet six service criteria. The system must serve the 
same geographic area as the recipient's service for the 
general public, at the same time, and at comparable 

reasonaoie. 

In order (o avoid Imposing undue financial demands on 
recipients, the NPRM proposes a "cost cap." (A Federal 



Within nine months of the effective date of the final-rule, 
each recipient would be required to have a program for 
providing transportation services to handicapped per- 
sons. During th'at time, the recipient would plan its serv- 
' e in consultation with handicapped persons and groups 
re P resentin 9 them. A public hearing would be held, and 
recipient would receive comments during a 60-day 
penod and respond to comm ents. The recipient's pro- 
gram and Information concerning the public participation 
process would be sent to UMTA for approval. An annual 
rep rt l UMTA would be rec l uired from each recipient. 
After the close of the comment period on the NPRM (De- 

agement and Bud 9 et before publishing. 



u 0C ?, tary Mar 9 ar et M. Heckler of the Department of 
, h and Human Services (HHS) recently took a further 
.' step toward a Possible cut-off of millions of dollars 
In federal funds for seven Massachusetts state institu- 
tlons for the mental| V retarded. The Health Care Financ- 
ng Adminlstrati on (HCFA) was directed to assemble a 
f deral surve ^ tsam comprised of health, mental retarda- 
ion ' and fire safetv Professionals. 
After coordlnatjon wjm ^ ^^ ^ ^ ^ dj _ 

rected to conduct surve V s at the Institutions to assess the 
extent to which tne schools are in compliance with feder- 
al standards - Heckler also insisted that parents of the 
mental| y retarded residents be consulted and considera- 
on given to their con cerns. 



due to deficient conditions at the facilities. The problem 
areas P nmarl| y involve fire safety and the privacy of living 
areas ' 



ss- 



(See MR Institutions, page 20) 



The theme for this year's celebration of "National Employ 
the Handicapped Week" in the Department of Education 
was the transition of disabled persons from school and 
training centers to the work place. 

In his introductory remarks, Secretary Bell stressed that 
schools must strive for increased enrollment of handi- 
capped students In vocational education classes. This 
Idea was underscored by Stephen Chitwood from the 
Parent Educational Advocacy Training Center, 
Alexandria, VA, who pointed out that according to statis- 
tics gathered In a 1982 report only 4.3 percent of second- 
ary students In vocational education were handicapped 
students. Dr. Chitwood described how successful the 
training of parents has been to be advocates and to work 
with teachers and school staff on procedures affecting 
their handicapped children. He now envisions a second 
phase of parent training focusing on vocational aspira- 
tions of their children and becoming knowledgeable 
about laws and opportunities. A 15-hour course for par- 
ents is now being developed by the Center to help par- 
ents work with schools to fulfill the promise of P.L. 
94-142 of preparing handicapped students for work. 

Margaret Collins and Pamela LeConte from the Anne 
Arundel County Public Schools in Maryland described a 
program of how one school system attempts to smooth 
the transition of handicapped students to work. Students 
are referred by teachers, parents, or counselors to the 
program which provides a vocational evaluation in a cen- 
ter or laboratory to arrive at a realistic diagnosis. A Voca- 
tional Support Team follows through by giving both voca- 
tional education teachers and students {and if desired, 
parents) continuing help after the vocational plan is de- 
veloped. Self-confidence and good work habits are 
stressed along with the acquisition of work skills. The Vo- 
cational Support Team said they found vocational educa- 
tors ill prepared to work with handicapped students, but 
that they gladly avail themselves of the services offered 
which include adapting equipment to the needs of the 
students. 

Paul Wehman from the Education Services of Virginia 
Commonwealth Services reported on his project which 
places moderately to severely mentally retarded individu- 
als In competitive employment. This program works with 
people whose mean IQ Is 45 and who as a rule cannot 
read, write or compute. The project has placed 150 pro- 
gram participants in food service, custodial and land- 
scaping businesses. Success Is only claimed if the em- 
ployment last six months or more. Wehman's program 
found the biggest obstacles to Integrating these severely 
retarded people into the real world of .work are overpro- 
tectlve parents and transportation problems. A key to 
success is involvement of employers in the program and 
creation of a buddy system among coworkers. 

For more Information about the three programs described 
above, contact each program directly: 



Stephen R. Chitwood 

Parent Education Advocacy Center 

228 S. Pitt Street, Suite 300 

Alexandria, VA 22314 

(703) 836-2953 

Margaret Collins 
Vocational Support Service 
Annapolis Junior High School 
1399 Forest Drive 
Annapolis, MD 21403 
(301)267-8476 

Paul Wehman 

School of Education 

Virginia Commonwealth University 

Richmond, VA 23284 

(804)257-1305 

The Department's celebration continued with a panel en- 
titled "Outstanding Post-Secondary Education Programs 
Focusing on the Transition of Disabled Students from 
School to Work." Presenters of the panel highlighted the 
need for colleges and universities to offer specialized 
services to persons with specific disabilities which would 
assist them in successfully completing their education. 

Two of the presenters, Jake Maness and Diane Perreira, 
described the many services offered to disabled students 
at Marlst College in Poughkeepsie, NY. 

Disabled students are identified upon entering the 
school. Support services may include instructing faculty 
members concerning the limitations posed by various 
handicapping conditions along with helpful suggestions 
for overcoming them. 

Some of the disabled students at Marist College have 
been successfully involved in the college's Cooperative 
Education Program. Under this program, students work 
for a semester as paid interns in businesses throughout 
the country. 

The second panel, "Adult Education/Vocational Rehabili- 
tation Linkages for the Disabled Person," described ways 
in which adult basic education (ABE) programs can bene- 
fit disabled adults. 

Nancy Pollock, from Gallaudet College's ABE program, 
discussed the ways in which this program assists deaf in- 
dividuals in the Washington, DC, area. The program of- 
fers evening courses in reading and arithmetic to 
hearing-impaired persons over the age of 16. The 
courses are designed to prepare students for high school 
equivalency testing and to increase job readiness and 
enhance basic skills which can lead to on-the-job promo- 
tion for those already employed. Other courses involve 
training in independent living skills and sign language for 
family members. 

ABE also plays an Important role In vocational rehabilita- 
tion, according to Rosemary Lareau of the Maryland Re- 
habilitation Center in Virginia. ABE programs at these 
centers are offered to clients in conjunction with special- 

(See Transition, page 14) 



-M 



The Human Exhibit 



On Thursday, October 20, the Columbia Lighthouse for 
the Blind in Washington, DC, conducted a novel em- 
ployer-awareness workshop, "Job Exploration for Em- 
ployers. " Unlike most meetings of this type, in which the 
majority of the exhibits unveil the latest in high technolo- 
gy, this galhering displayed people. 




Approximately 25 blind people gathered together in one 
of the Lighthouse's conference rooms to share Informa- 
tion about their jobs with employers In the Washington 
area. A wide range of professions were represented by 
the blind participantscomputer programming, electrical 
engineering, musical accompaniment, systems analysis, 
law and others. 

The setting was informal and visiting business-people 
were encouraged to circulate freely among the partici- 
pants, asking questions. Most of the employers took full 
advantage of this opportunity many of them had little or 
no previous contact with blind persons. Questions such 
as: How did you learn to type? How did you get your Job? 
How can we learn what a blind person can and can't do? 
and How would you handle our type of work? were asked 
and answered many times that day. 

The Lighthouse staff believes that by providing a forum 

,mi^ ra h Pn 3 pe0tlVe em P'y ers C *n freely interact with vis- 
ually handicapped individuals, many preconceived 



tter it l flteMW ****** lnformation 
* the Clearinghouse on the Handicapped is shown 






Spotlight on Child Abuse 
And Disabled Children 




capped children as weHs c^nn, "* """ hand| - 
agencies thai provide ftZ, L " 8 a " d Federal 
dren. Several new * ""* 



Now Pro|*cl to Srv,s-a Year Olds 



venting abus6 and 
"ainir,g program was 
project jointly 
(ED) and the 
fHHS) lo 
children. 



and 



developed 

programs. Ten percent nf ihJ u-. , 

Start, which served Too ooo ,h^H dren enralled 

handicapped. C new Dmi^ ^ ' h ' S year ' 

of six Resource Ac oe "spTr'r, ^ ' ap the 

and technical assls ^ / ^ " h ' c d h P>vW- 

serving handicapped children aft 

whioh 



ln 
must be 

servloes 
'raining 



$300,000 from 
$100,000 from 
Youth and Families, the 



bv lh a $400 ' 000 

Pai1ment ' Edu( =ation 

" H an Sewi08s 
y oung handicapped 



^ 

f d " oati n Pr 9 rams 
ra lon on Ch| Wren, 

S 1 



also help 



Education and 
focusing on abuse 
dren because "we do 






for 
= ald the PJect is 

handloa PP d oh- 



mainstreamlng handicapped children in Head Start pro- 
grams. The manuals will be supplemented with audiovis- 
ual training materials to help Head Start teachers work 
more effectively with handicapped children, 

Before use in the 15,000 public school systems begin- 
ning in the fall of 1984, the projects will be field-tested in 
Boston, MA, Chapel Hill, NC, Portland, OR, Kansas City, 
KS and Washington, DC. 

Conference on Child Abuse 

In late September, more than 2,000 social workers, edu- 
cators, members of the health and legal professions, and 
representatives of parent organizations participated in 
the Sixth National Conference on Child Abuse and Neg- 
lect In Baltimore, MD. The theme of the conference was 
"A Commitment to Children; Strengthening Families, 
Communities and Services." 

Organized by the National Center on Child Abuse and 
Neglect, Office of Human Development Services, HHS, 
the conference was cosponsored by 25 national, local 
and state organizations concerned with the welfare of 
children. Attendees discussed the protection of children 
in residential Institutions, abused and neglected children 
with developmental disabilities, and other subjects deal- 
ing with the abuse of children in general. 

Tapes of over 100 sessions covering a wide range of 
topics featured at the conference will be available for 
sale, A price list may be ordered from: Db Tech, 4865 
Cordell Avenue, Bsthesda, MD 20814, (301) 951-0333. 

Proceedings of the conference will be available in Janu- 
ary and can be ordered by contacting: Junior League of 
Baltimore, 4803 Roland Avenue, Baltimore, MD 21210. 

Proposed R&D Priorities Published 

The Office of Human Development Services (OHD). 
HHS, published in the August 29, 1983, Federal Regis- 
ter, a notice of proposed FY 1984 child abuse and neg- 
lect research and demonstration activities to be consid- 
ered for support as a part of the OHD coordinated 
discretionary program. After consideration of the com- 
ments, which were due October 28, regarding the above 
notice, final child abuse and neglect priorities will be an- 
nounced and will be carried out by the National Center on 
Child Abuse and Neglect, Children's Bureau, P.O. Box 
1182, Washington, DC 20013. 

Among the 15 research and demonstration priorities be- 
ing considered are two that are specific to handicapped 
children: 1) Development of Procedures for Ensuring Pro- 
tection for Handicapped Infants states have had to deal 
with instances of medical, nutritional and social service 
neglect of Impaired Infants,. The development of model 
procedures to ensure appropriate child protective action 
for national dissemination has been identified as an im- 
portant area, 2) Collaborative Approaches to Addressing 
Needs of Preschool Handicapped Abused and Neglected 
Children there is evidence that there is a higher inci- 
dence of abuse and neglect In children with handicapping 
or disabling conditions. The major difficulty experienced 
by Child Protective Service (CPS) workers appears to be 



the identification and selection of specific service provid- 
ers to treat the children and the establishment of an ef- 
fective client and service provider feedback mechanism. 
Information about how to work with a consortium of pro- 
grams and providers at the community level (CPS, Head- 
start, public school systems, regional mental health cen- 
ters, medical facilities and group or individual 
practitioners) to implement an integrated referral and 
monitoring system for abused and neglected children 
with handicapping or disabling conditions is needed. 

The other 13 priorities under consideration for FY 1984 
deal with improved services for abused and neglected 
children through child protective service agencies, the 
public school system, juvenile courts and community- 
based programs. 

OHDS anticipates that the program announcement for 
the coordinated research and demonstration program will 
be published in the fee/era/ Regist&r later this year. The 
R&D pro|ects conducted by the National Center on Child 
Abuse and Neglect are a part of their activities designed 
to assist and enhance national, state and community ef- 
forts to prevent, identify and treat child abuse and 
neglect. 

Clearinghouse Produces Bibliographies 

The Clearinghouse on Child Abuse and Neglect Informa- 
tion (operated by Herner and Co., 1700 North Moore 
Street, Arlington, VA 22209, telephone: (703) 558-8222) 
offers two annotated bibliographies, Physically Handi- 
capped Children and Child Abuse and Neglect and 
Mental Retardation and Child Abuse and Neglect which 
are updated semiannually. 

The bibliographies cover articles in professional journals, 
books and program descriptions. They comprise a wide 
range of topics which illustrate the complexity of the con- 
nection between disablement and child abuse and neg- 
lect. Researchers looked into the cause and the rots the 
handicapped child plays in triggering abuse and neglect 
and they have looked at handicapping conditions as the 
result of abuse and neglect. They studied the character- 
istics of the abusing parents, their use of drugs, and their 
past history of having been an abused or neglected child. 
Studies have been done on the language deficit of 
abused and neglected children, on the beneficial effects 
of play therapy, and on the connection between juvenile 
deliquency and handicapped abused children. There are 
discussions of court cases, parents fighting the termina- 
tion of their parental rights because of abuse and neg- 
lect, and the vulnerability of handicapped children, espe- 
cially retarded and blind children, to sexual exploitation. 
Several articles review existing literature both on the 
family with a handicapped child and on the role of the dis- 
abled child in abuse and neglect. The bibliographies cov- 
er roughly the literature of the past deep''" 



Health and Human Services Secretary Margaret M. Hec- 
kler recently announced the award of almost $2 million in 
grants to improve care for handicapped children. 

The Maternal and Child Health Block Grant funds, set 
aside for special projects of regional and national signifi- 
cance (MCH/SPRANS), support a wide variety of activi- 
ties recommended by a Workshop on Children with 
Handicaps and Their Families, held in December 1982. 
The Workshop was called by C. Everett Koop, M.D., Sur- 
geon General of the U.S. Public Health Service, who re- 
alized that the lives of many handicapped children are 
being saved through the revolutionary transformations in 
medical technology of the last four decades, but that 
community support services for the children and their 
families are often lacking or not visible. 

The participants in the Workshop included health profes- 
sionals, financing experts, consumer representatives, pa- 
tients and families, and local, state and Federal govern- 
ment officials. They concentrated on the severe, specific 
problems of the ventilator-dependent child, and the find- 
ings for this prototype were extrapolated for their implica- 
tions for all handicapped children. 

The major objectives of the Workshop were: 1} to exam- 
ine the problem of service delivery to handicapped chil- 
dren and their families in order to develop strategies for 
providing community-based services as an alternative to 
acute care facilities; and 2) to examine current funding 
mechanisms for providing services in order to develop 
new strategies of improving financing for safe, appropri- 
ate, and cost-effective health care for these children and 
their families in nonacute care facilities. 

The activities supported by the MCH/SPRANS grants in- 
clude development of new standards of care that better 
reflect family needs and quality of life for the disabled 
child development of regional care systems to help 
transfer children out of institutions and into home or 
home-like settings, as well as data collection and Infor- 
mation sharing. The new grants were awarded as follows; 

The University of Iowa and Michigan State University 
received awards to develop standards of care that as 
recommended by the Workshop, will be innovative, focus 
on the needs of the family and reflect concern for the 

. U ^f!i d *f iid : The '<a PNect, 



development of regionalized juvenile arthritis centers. 
The grantees are: National Jewish Hospital, Denver, CO, 
$142,310; Emory University, Atlanta, GA, $75,000; Chil- 
dren's Medical Center, Honolulu, HI, $150,000; La 
Rabida Children's Hospital, Chicago, IL, $130,000; Medi- 
cal Center, Cincinnati, OH, $125,000; and Texas State 
Department of Health, $125,000. 

Health Research, Inc., in New York City, received 
$140,000 to develop a system of data collection and 
coordination of care to children with chronic illnesses 
which can be replicated throughout the State of New 
York. 

The University of Iowa received $160,000 to continue 
the networking of services along the lines earlier devel- 
oped in an Iowa model. 

The National Center for Clinical Infant Programs in 
Washington, DC, was awarded $124,977 for "Project 
Zero to Three," which is designed to assist ten selected 
states in their efforts to improve services for at-risk and 
disabled children aged 0-3 and their parents. The project 
will explore ways to share knowledge and to build con- 
sensus among professionals through meetings, consulta- 
tions and technical assistance. 

Copies of the Report of the Surgeon General's Work- 
shop on Children with Handicaps and Their Families are 
available without charge while supplies last from: Nation- 
al Center for Education in Maternal and Child Health, 
3520 Prospect Street, N.W., Washington, DC 20007, 



h alH ' 

with all kinds of disabling conditions; and the Michigan 

Stes at $13 ' 000 ' WHI f CUS n **w wSh 

Three MCH/SPRANS grants were awarded to develop 
systems of regionalized care with a focus on ventilator- 

ffit^Y*" r 6 Pr jeCtS intend to ~ 
2 inh ? ln ? Wutlonal Se " in9s to home or h -llke 
svl b * devel T 9 and Wnlno community support 
M^f, The . grantees are: Crippled Children's Program 
at the University of Illinois, $190,000; Children's HoaStaT 
New Orleans, LA, $136,019; and Meryland State DeSart- 
ment of Health and Mental Hygiene, $190 000 P 
Six MCH/SPRANS Grants ^ere gll.io^e the 
14 



Transition 

(Continued from page 1 1) 

ized vocational skill training. Like the Gallaudet program 
job readiness and advancement potential are markedly 

S 2 r the StUd8ntS through the Acquisition of 
reading, wr.ting and arithmetic skills. Competency In the 
three Rs provides a solid base upon which the super- 
structure of specialized skill training can be built. 

The addresses for the above programs are: 

Jake Maness and Diane Perreira 
Marist College 
892 North Road 
Poughkeepsie, NY 12601 

Nancy Pollock 

Adult Basic Education Program 

Gallaudet College 

800 Florida Avenue, N.E. 

Washington, DC 20002 

Rosemary Lareau 
Maryland Rehabilitation Center 
2301 Argonne Drive 
Baltimore, MD 21218 

Polly Brown 

Woodrow Wilson Rehabilitation Center 
Fishersvllle, VA 22939 



DO Children and the 
HHS Adoption Initiative 



Earlier this year, HHS announced a national effort to pro- 
mote activities which would move special needs children 
out of foster care into permanent adoptive homes. The 
Department recently focussed its activities on the adop- 
tion of children with developmental disabilities. 

Dorcas R. Hardy, Assistant Secretary for Human Devel- 
opment Services, HHS, leads the Department's adoption 
initiative. Hardy recently participated In a Special Needs 
Adoption Workshop, along with Clarence Hodges, Com- 
missioner for the Administration for Children, Youth and 
Families, and Laurie Flynn, Executive Director, North 
American Council on Adoptable Children. Workshop par- 
ticipants discussed methods to increase cooperation be- 
tween child welfare workers and local developmental dis- 
ability groups, to foster recruitment and public awareness 
of special needs adoptions, and to use available adoption 
subsidies. 

The Office of Human Development Services recently 
published a newsletter, Adoption Notes, which was de- 
voted almost entirely to the topic of adoption of 
developmentally disabled children. The newsletter cited 
various publications, films, television programs and proj- 
ects around the country which focus on developmentally 
disabled children. 

This special issue of Adoption Notes Is available from: 
Office of the Assistant Secretary for Human Development 
Services, Att.: Pat Wood, Room 309F Hubert Humphrey 
Building, 200 Independence Avenue, S.W., Washington, 
DC 20201. 

ADD Reorganization 
Announced . 

A new Statement of Organization, Functions, and Dele- 
gations of Authority for the Administration of Develop- 
mental Disabilities (ADD), Office of Human Development 
Services, Department of Health and Human Services, 
was published in the October 27 Federal Register. The 
purposes of the new notice are: 1) To reduce the Adrflin- 
istration of Developmental Disabilities from five divisions 
to three by removing the public affairs function (central- 
ized at HDS level) and placing the management services 
functions under a small staff in the Office of the Commis- 
sioner; and 2) to consolidate the functions of the ten re- 
gional offices on Developmental Disabilities Into four ex- 
panded area offices. 

The Regional Offices on Developmental Disabilities are 
now located in Regions III, VI, Vil, and IX. The areas des- 
ignated by the standard Federal Regions are covered by 
the DD Regional Offices as follows: Regions I, II, and III 
by Region III, Philadelphia, PA; Regions IV and VI by Re- 
gion VI, Dallas; Regions V, VII, and VIII by Region VH, 
Kansas City, Mo; and Regions IX and X by Region IX, 
San Francisco. Each office, under the direct supervision 



of the Regional Administrator, serves as the administra- 
tive focus between the Central Olfice and State and local 
governments and other organizations for the considera- 
tion of program issues and policies affecting service 
needs and rights of developmentally disabled persons. 

1984 Increase in 
Medicare Payments 

The Department of Health and Human Services has an- 
nounced that because of continuing increases in health 
care costs, payments by Medicare beneficiaries will auto- 
matically increase again in 1984. The increases are re- 
quired under 1966 Medicare law, and they affect benefic- 
iary payments of hospital deductions, coinsurance and 
monthly premiums. 

Under Medicare Part A (hospital insurance), the deduct!- 
ble patients pay for hospitalization Will increase from 
$304 to $356 on January 1, 1984. The rise in this deduct- 
ible also increases the amount of coinsurance beneficia- 
ries must pay if they remain in the hospital for more than 
60 days during 1984. The rate the patient must pay for P 
stay of more than 20 days in a skilled nursing facility f 
is increased. 

Under Medicare Part B {supplementary medical i 
ance), the basic premium will rise from $12.20 to $1 
a month, January 1, 1984, under the Social Secum, 
Amendments of 1983. 

About 30 million people are covered under the Medics 
program. In 1984, the number of enrollees is expected 
grow to about 30.5 million. Medicare spending is ex- 
pected to increase from $56.1 billion in FY 1983 to $64.7 
billion in FY 1984. 

The new rates were published in the Federal Register for 
September 30, 1983 on pages 44912-44917. 



New HHS Service to 

Hispanic Radio Stations 

A new service especially aimed at Hispanic radio stations 
across the country has been announced'by Margaret M. 
Heckler, Secretary of the Department of Health and Hu- 
man Services.' A toll-free 800 line will afford the stations 
an opportunity of receiving from HHS vital health and so- 
cial services information in Spanish. 

This new service, expected to be in operation within the 
next few weeks, is the result of a survey of Hispanic radio 
stations to determine the kinds of information needed and 
the best way to deliver It. There are some 400 radio sta- 
tions in the country that broadcast in Spanish or have sig- 
nificant portions devoted to Spanish broadcast. 

As soon as the new toll-free line Is set up, stations will be 
contacted and given specific information on the availabili- 
ty of weekly news, features and public service 
announcements. 

15 



FY 1984 Appropriations 
Legislation Signed 



The Fiscal Year 1984 appropriations legislation for the 
Departments of Labor, Health and Human Services, and 
Education and Related Agencies was signed into law by 
the President on October 31. The agencies had been op- 
erating under a Continuing Resolution which was due to 
expire on November 10, The Clearinghouse will report on 
funding levels for the major programs concerning the 
handicapped in the next issue of Programs for the 
Handicapped. 

NT ID Dedicates 
New Facility 

A new academic building has recently been dedicated at 
the National Technical Institute for the Deaf (NTID) at the 
Rochester (NY) Institute of Technology. 

The 30,000 square foot facility contains classrooms, lab- 
oratories, and offices. It was designed to help NTID ac- 
commodate an influx of students born deaf as a result of 
a rubella epidemic in the early 1960's. The location pro- 
vides easy access to other facilities on the BIT campus to 
further promote the integration of deaf students and their 
hearing peers. RIT's deaf students also benefit from 
nearly 200 other technical and professional courses of 
study offered by RIT's other eight colleges. 

The new facility was named for Hugh L Carey, former 
U.S. Congressman and New York State governor, who 
was one of the authors of the legislation that created 
NTfD at RIT, which is funded by the U.S. Department of 
Education. It represents the world's first effort to educate 
large numbers of deaf students within a college campus 
planned primarily for hearing students. More than 1,000 
deaf students study and reside on the RIT campus. 
- - " - 

Cooperative Efforts in 
Arts Education Announced 



Commitlee - ^3 for the Handicapped 
(NCAH) and the Alliance for Arts Education {AAE) have 
announced new cooperative efforts to assure that every 
student, abled or disabled, Is allowed access to the ave- 
nue of self-expression found in the arts. 

Both NCAH and AAE are educational affiliates of the 
John F. Kennedy Center for the Performing Arts. NCAH 

Slhil!f ! i ?; s j x * rdlnatin 9 a 9sncy for arts programs for 
disabled individuals, involving over 400,000 handicapped 
persons. Founded in 1974, NCAH now supports year- 

9 "?,? 5 StateS ' the Dlstrlct of ^lumbia and 

Si f r m0te$ arts curricula in our n's 
Other major emphases are on the development 

nil ??ni P n $ ? comprehensive arts education, techni- 
cal training and assistance, and arts education on the 
state and community level. 



For more information, contact: National Committee, Arts 
for the Handicapped, Education Office, John F. Kennedy 
Center for the Performing Arts, Washington, DC 20566, 
(202) 332-6960. 



Shoe Exchange 



The National Odd Shoe Exchange, a nonprofit service for 
people who need two different size shoes because of 
birth defects, polio, injury, amputation or illness, has 
computerized its membership files so that a shoe match 
can be made in a matter of seconds. 

The function of the Exchange is to serve as a clearing- 
house, to bring together those persons with mutual prob- 
lems and to aid them in securing properly sized shoes. At 
present there are 14,000 registered members from all 
over the world, who are matched according to size, age 
and taste in shoe styles. In addition to putting members 
in touch with one another, the Exchange receives tax de- 
ductible donations of mismated shoes from shoe stores 
all over the country. The Exchange Is now encouraging 
shoe manufacturing companies and stores to begin sell- 
ing mismated shoes. 

For further information about the Exchange or its news- 
letter, The Exchange News, contact: National Odd Shoe 
Exchange, Rural Route 4, Indlanola, IA 50125, (515) 
961-5125. ' 



New Electronic Device 
For Vision Impaired 



Viewscan, a portable electronic magnifying reading sys- 
tem for people with low vision, is now available from 
Telesensory Systems, Inc., an organization that was es- 
tablished In 1971 to design, manufacture, and distribute 
electronic aids to minimize the limitations imposed bv 
physical disabilities. y 

People with low vision had often asked for a device com- 
parable to the Optacon, a portable reading machine used 
by totally blind individuals, or a portable read/write sys- 
tem like the VersaBraille system, also distributed bv 
Telesensory Systems, Inc. 

The Viewscan Is manufactured by Wormald International 
Sensory Aids. By scanning a small hand-held camera 
across the page, the Viewscan user can see a bright 
magnified image of the text on the neon matrix display 
screen. The system fits inside a briefcase/By connecting 
the device to a minicomputer, it becomes the Viewscan 
Test System giving the user the ability to take notes qui- 
etly and read them on the spot. 

For further Information, contact: Telesensory Systems 
P0 



The Association for Children and Adults with Learning 
Disabilities has announced the 1984 ACLD International 
Conferonco to bo held at the New Orleans Hilton Hotel on 
February 28-Mnrch 2, 1984. The theme of the Confer- 
ence Is "Tradition, Renewal, Change." A preliminary pro- 
gram listing workshops, training courses, and sessions, 
and housing, registration and travel information Is avail- 
able from:"Associatlon for Children and Adults with 
Learning Disabilities, 4156 Library Road, Pittsburgh, PA 
15234, (412)341-1515. 

Special Education Conference 
And Call for Papers 

The American Association of Special Educators, Inc., has 
announced the 7th Anglo American Special Education 
Conference, to be held at Chelsea College in London, 
July 2-3, 1984, and has issued a Call for Papers and Ex- 
hibits. The Conference theme will be "Educational 
Trends and Developments in U.S. and UK" and "The Fu- 
ture of Computers In Education." 

Highlights of the tour to the UK will include attendance at 
the Conference, various school visitations and seminars, 
and receipt of college credits, and income tax 
deducibility for educators. 

Information on papers and exhibits should be forwarded 
to: Louis Marpet, American Association of Special Edu- 
cators, 107-20 125th Street, Richmond Hill, NY 11419, 
(212) 641-1224. Reservation forms are available from 
AAQE Tours at the above address. 



Special Services at 
Metropolitan Opera 

The Metropolitan Opera Guild Education Department 
sponsors the outreach education programs of the Metro- 
politan Opera Association. Through its programs and ma- 
terials, opera Is made accessible to people of all ages 
and backgrounds. 

An infrared listening system has recently been Installed 
at the Metropolitan Opera House to provkle grea te ^c ar^ 
ty and Intelligibility of performances or hearing-Impaired 
audiences. Services for blind and visually handicapped 
persons Include; program notes on cassette and In braille 
detailing all Metropolitan Opera P^" *' "^"^"''" 
large print and braille for operas In the Met repertoire, 
score desk seats, backstage tours, and selected Opera 
News magazine articles In braille. 
For further Information, contact: Debra Yanover, Special 
Services Coordinator, Metropolitan Opera, Lincoln Cen- 
ter, New York, NY 10023, (212) 582-7500, ext. 464. 



The American Association on Mental Deficiency (AAMD) 
has announced its 108th Annual Meeting to be held May 
27-31, 1984, at the Hyatt Regency Hotel in Minneapolis, 
MN. 

AAMD, founded in 1876, is an interdisciplinary profes- 
sional and scientific organization dedicated to mental re- 
tardation. Although the membership represents a wide 
variety of professions from different parts of the world, it 
has maintained a strong unity of purpose: to seek for 
mentally retarded persons the right to develop their po- 
tential to the maximum; to satisfy fully the needs of their 
personalities; and to become, as far as possible, inde- 
pendent and useful members of the community. 

The 107th Annual Meeting was attended by 1,800 per- 
sons, with 700 speakers and 40 exhibitors. 

Copies of the Preliminary Program for the 108th meeting, 
including housing and registration forms, are available 
from- AAMD, 5101 Wisconsin Avenue, N.W., Washing- 
ton, DC 20016, or call toll-free, (800) 424-3688. 

Technology and Media 
Organization Formed 

A new international organization, Technology and Media 
for Exceptional Individuals (TAM), has been formed to 
promote closer relationships among educators and 
others concerned with the application of technology to 
meet the needs of handicapped children and adults, the 
gifted, and the aged. TAM has applied to become a Divi- 
sion of the Council for Exceptional Children. 

In announcing the new organization, TAM said that "tech- 
nology and media are having a dramatic impact on gen- 
eral education and hold Important implications for the 
fields of special education, rehabilitation, geriatrics. The 
ability of handicapped individuals to function in our socie- 
ty can be greatly enhanced by the use of technological 
tools for education and daily living. Computers, telecom- 
munication devices, cable TV, robotics, and other new 
developments can help exceptional individuals to lead 
normal lives." 

TAM will publish a journal and newsletter and conduct 
training programs, conferences, and workshops, It also 
plans to review and field test equipment and software, 
and will cooperate closely with education and govern- 
ment agencies and with business and industry in re- 
search, demonstration, and review of technology 
applications. 

Further information and a membership application to join 
TAM are available from; Charles (Skip) MacArthur, Mem- 
bership Chairperson/TAM, Institute for the Study of Ex- 
ceptional Children, Department of Special Education 
University of Maryland, College Park, MD 20742, (301) 
454-5427. 

17 



Announcements 



Sibling Seminar 
Announced 



The Second National Seminar dealing with Siblings of 
Developmental^ Disabled Persons will be held on May 
3-4. 1984, in New York City. The sponsors of the seminar 
are Kean College of New Jersey, the New York City As- 
sociation for the Help of Retarded Children, New York 
University School of Social Work, and the Mental Retar- 
dation Institute. 

The seminar will focus upon current developments in re- 
search and service, and will seek to involve siblings, par- 
ents and professionals in the deliberations. Papers deal- 
ing with these concerns are being sought by the Planning 
Committee. Interested individuals and groups should 
contact: Meyer Schreiber, D.S.W., Chair, Planning Com- 
mittee, Sibling Seminar, Kean College of New Jersey 
Union, NJ 07083, (201) 527-2090. 

The proceedings of the First National Seminar will be 
available by January 1, 1984. A check for $6 payable to 
NYC AHRC may be sent to: Lucy Garcia, NYC Associa- 
tion for the Help of Retarded Children, 200 Park Avenue 
South, New York, NY 10003 



Request for Information 



Voice Indexed Dictionary 

By the end of this year, people who are unable to read 
print will have access to a recorded dictionary titled First 
Recorded Dictionary for the Blind Uses New Technolo- 
gy. This recorded version of the Concise Heritage Dic- 
tionary, containing over 55,000 entries, employs a new 
information retrieval technology for the blind known as 
voice indexing. When a cassette tape player (which are 
distributed by the National Library Service for the Blind 
and Physically Handicapped to its patrons) is placed in 
the fast-forward mode of operation, one normally hears 
the unintelligible scream of highly speeded-up speech. In 
a voice-indexed cassette, however, understandable 
normally-pitched index words are superimposed over the 
fast-forward chatter. This allows individuals to quickly lo- 
cate desired material by listening to the string of index 
terms while the tape is at high speed. When the desired 
term is heard, the tape Is returned to the normal playing 
mode and the full text is heard. The Dictionary, which is 
recorded on 56 four-track cassettes, took two years to 
complete and involved thousands of hours of narration 
time. It is expected to be available within the next few 
weeks to NLS borrowers through the national network of 
cooperating libraries. It will also be available for purchase 
at $82.50 from the American Printing House for the Blind 



The Human Services Research Institute in Boston re- 
rTnf a l S(S ! ance in Iocalin 9 examples of needs assess- 
rnent methods used at the state or local level to-estimate 
he housing needs of handicapped individuals (i.e., phys 

' ally retard *d/develo P mentally 
h menta!ly fl1 persons >' 

SUmmanZ resource book 



voice 

cann w / o GuidQ fo - 

capped V,sitors, Boy Scout Held Book, Cooking for My- 
self . Everyone s Money Book, Music Business Hand- 
book and Career Guide, and others. 



Braille Research 






' natlVe Pr 9rams < ^sorib ' he r": 



nr Qe * U[ var| ous braille de- 

Kss3=s? ! <i-s 



LEGAL ADVOCACY 



Accommodating the Spectrum of Individual Abilities is a 
monograph prepared by the U.S. Commission on Civil 
Rights, based upon a two-day consultation the Commis- 
sion held on "Civil Rights Issues of Handicapped Ameri- 
cans," during which they met with nationally recognized 
experts. The book is intended to provide overall guidance 
to those charged with interpreting and applying handicap 
nondiscrlmination requirements. It focuses on the issue 
of reasonable accommodation because of its central im- 
portance to handicap discrimination law. Part I provides 
basic information about handicapped people, the barriers 
they face, and their legal rights. Part II suggests ways to 
resolve legal Issues concerning handicap nondiscrimina- 
tion requirements. The authors draw upon volumes of lit- 
erature in the civil rights for the handicapped field, citing 
titles and additional text through extensive use of foot- 
notes. Single copies of this 180 page monograph are 
available without charge from: U.S. Commission on Civil 
Rights, Publications Warehouse, 621 N. Payne Street, 
Alexandria, VA 22314, (703) 557-1794. (As of 10/28, the 
Commission had not received an appropriation for FY 
1984 funding. Programs for the Handicapped will report 
on any change in source for the above publication.) 



Rights and Advocacy for Retarded People by Stanley S. 
Herr is an analysis of the movement during the last dec- 
ade for legal and human rights for mentally retarded peo- 
ple, concentrating on three goals: to help retarded people 
avoid admission to institutions; to gain protection from 
physical and psychological harm; and to secure opportu- 
nities for community living, including appropriate housing, 
education, and social services the elements of normal 
life, ft discusses the typical institution for the mentally re- 
tarded, and the ways policies have been adjusted to re- 
flect the concerns of professionals, the public and the 
families of mentally retarded persons. It examines the le- 
gal changes that have resulted at federal and state levels 
regarding the operation of the institutions. There are 
chapters on the rights of retarded persons to the least re- 
strictive modes of care, to appropriate, individualized ha- 
bilitatlon and education, and to community relnteg ration. 
The book discusses the need for an independent advoca- 
cy system, and proposes a model for securing trained ad- 
vocates for mentally disabled persons now living in cen- 
tral facilities as well as in geographically dispersed 
locations. The final chapter addresses the limits of legal 
reforms and the unfinished agenda for the advocates for 
mainstreaming mentally retarded people. This 265 page 
hardcover book is available at $26.95 from: Lexington 
Books, D.C. Heath and Company, 125 Spring Street, 
Lexington, MA 02173. 



Legal Rights and Mental Health Care by Stanley S. Herr, 
Stephen Arons, and Richard E. Wallace, Jr., is intended 
as a guide to the process of mental health legal advocacy 
and the rights of persons receiving mental health care. 
Although written primarily for mental health practitioners, 
it will prove useful to other mental health professionals, 
clients, advocates, and interested citizens. It provides a 
summary of basic legal theories and client rights in the 
mental health system. It identifies advocacy approaches 
and legal rights that can augment the principles of auton- 
omy and social integration. Part I describes the nature of 
advocacy in mental health systems and the interrelated 
issues of competency, consent, and client participation. 
Part II sets forth rights in the mental health treatment 
process, including the right to treatment, the right to re- 
fuse treatment, the principle of the least restrictive alter- 
native, and the rights to privacy, confidentiality, and ac- 
cess to records. Part III discusses rights to community 
services, including some special problems and right of 
children, guardianship and other protective services, and 
nondiscrimination and the promise of equal opportunity. 
The final chapter describes ways in which clinicians can 
assist those they serve to exercise their rights and oppor- 
tunities. This 190 page hardbound book is available at 
$22.95 from: Lexington Books, D.C. Heath and Compa- 
ny, 125 Spring Street, Lexington, MA 02173. 

EDUCATION AND AUTISM 



Teaching Autistic Children to Communicate by Paige 
Shaughnessy Hinerman, is intended for speech clini- 
cians, special education teachers, program directors and 
therapists who work with autistic and communicatively 
impaired children. The author is the former director of the 
Utah Program for Autistic Children, a federal demonstra- 
tion project and group home for young autistic children, 
who developed the step-by-step guide to help autistic 
children learn to attend to instruction, develop social rela- 
tionships and master basic communication skills. The 
book includes directions for teaching autistic children to 
"pay attention," methods for determining their capacity 
for verbal communication, and directions for teaching 
both verbal and nonverbal communication. It provides an- 
swers to questions such as: What words should I teach? 
At what point should I start teaching manual communica- 
tion? Which sign language course should I use? How 
should I document progress? What help can I expect 
from parents? What can I do to increase target behavior? 
What factors are most critical for success? Copies of this 
210-page hardbound book are available at $24.95 each 
from: Aspen Systems Corporation, P.O. Box 6018, 
Galthersburg, MD 20877, (800) 638-8437 or In Maryland 
251-5233. 



Wheelchair Exercises 



The Wheelchair Workout with Janet Reed presents a 
30-minute program of exercises for wheelchair-bound in- 
dividuals. The package contains a 42 page Information 
Manual and an audio-cassette tape. The program incor- 
porates elements of aerob'ic, isotonic, and isometric 
movements and is divided into three parts: warm-up, 
workout, and cooldown. Exercises are designed to in- 
crease muscle strength, endurance, and flexibility, and 
can all be performed in a seated position. The Informa- 
tion Manual provides illustrated instructions for carrying 
out the exercises, and provides information on nutrition 
and physical fitness in general. The cassette contains the 
actual exercise session with musical accompaniment. 
The package is available for $13.50 plus $1 postage and 
handling inside the U.S. ($2 from outside the country) 
from: Wheelchair Workout, 750 South 23rd Street, 
Arlington, VA 22202, or for further information, call (301) 
279-2994. 



MR Institutions 

(Continued from page 10) 



By dispatching the HCFA team to make a detailed, formal 
inspection of the Massachusetts facilities, Secretary Hec- 
kler laid the goundwork for what she said she hopes will 
never happen, "a cut-off of federal funds to my home 
State. But Massachusetts has had a decade to bring it- 
self into compliance with federal standards. The legisla- 
ture has the future of these schools and the people they 
serve in its hands. I urge the legislature to appropriate 
the necessary funds so that the federal government can 
continue to do its financial part." 

Decisions concerning what action is necessary to bring 
the facilities into compliance will be made after the HCFA 
team has made its report to the Secretary taking into 
account funds appropriated by the state legislature to 
correct outstanding areas of noncompliance. 



Psychosociaf Rehabilitation: 
A Video Series 

A picture is worth a thousand words! For people who 
have wished for pictorial documentation of programs- 
seeing people in action, listening to conversations be- 
tween clients and counselors, talks between employers 
and placement specialists a new video series, "Ap- 
proaches in Psychosocial Rehabilitation," should be the 
answer. 

The series was produced by Fellowship House, South Mi- 
ami, Florida. It shows the effectiveness of psychosocial 
methodologies and management of a community support 
network for rehabilitation of severely emotionally disabled 
adults. The series is in eight parts, each showing an im- 
portant facet of the process: 1) Introduction to Psychoso- 
cial Programs; 2) Staff Role: the Generalist Model; 3) 
Social Rehabilitation Program; 4) Prevocational Rehabili- 
tation Program; 5) Transitional Employment; 6) Residen- 
tial Continuum in the Community; 7) Parents and Con- 
cerned Friends Organizations; and 8) Involvement of 
Community Groups. 

Fellowship House, a not-for-profit organization, provides 
comprehensive services to severely emotionally disabled 
adults. Its philosophy, based on the principles of Foun- 
tain House in New York, is to assist club house members 
to learn and improve societal skills leading towards inde- 
pendence in the community and providing them social 
support services of indefinite duration. Staff and club 
members played themselves and helped to make the 
series as close to life and as Informative as possible. 

Each videotape contains a narrated documentary por- 
traying one specific program and a discussion section on 
management issues. A printer user guide accompanies 
each video tape. Individual tapes cost $195; the entire 
series, $1250. Inquiries should be addressed to: Fellow- 
ship Foundation, 5711 South Dixie Highway, Miami, FL 
33143, (305)667-1036. 



Clearinghouse on the Handicapped 

The 1983 edition of the Pocket Guide to Federal Help for the Dis- 
abled Person is now available from the Clearinghouse. This consumer 
booklet outlines the government benefits and services and tells handi- 
capped individuals where to apply. 

Single or multiple copies are available without charge. Organizations 
that serve handicapped individuals are encouraged to order copies for 
(heir members and to notify their affiliates of the booklet's availability. 
Send a self-addressed mailing label to: Clearinghouse on the Handi- 
capped, U.S. Department of Education, Room 3119 Switzer Building, 
Washington, DC 20202, (202) 245-0080.