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122

POPULATION

AND ENVIRONMENT

duct

a

survey

to

determine

the

service

needs of

clients

of the

state

who

are

developmentally

disabled,

the

extent to

which these needs

are

being

met

in

a

satisfactory

manner,

and the

reasons

lying

behind

any

discontent.

To

help

do

this,

data

were

collected

in

face-to-face

interviews,

with

emphasis

being placed

upon

the

perceptions

of

the

clients rather than

upon

clinical

determinations

of need.

In

addition

to

providing

a

descriptive profile

of

the

service

needs

of

consumers

of

developmental

disabilities

services,

information

on

several

characteristics of the clients and their situation were also collected. This

makes

it

possible

to

determine

differentials

in

client

satisfaction,

thus

gain

ing insights

into

service

gaps

that

may

exist

and

ways

in

which the service

delivery

system

may

be

changed

to

provide

needed

services

more

satisfac

torily.

This

paper

describes the

methods

by

which

the data

were

collected,

the characteristics of

the

clients,

their

degree

of

satisfaction

with

the

serv

ices

they

receive,

and

the

reasons

for

any

dissatisfaction which exists.

METHODS AND SOURCE OF DATA

The

Florida

Department

of

Health and Rehabilitative

Services

(HRS)

and

the

Epilepsy

Foundation

provided

the

investigators

with

a

list of clients

and

their

addresses.

A

sample

of clients

residing

in

three

counties,

Dade,

Hillsborough

and

Leon,

was

generated

randomly.

These

counties

were

se

lected because

of

their

geographic

location,

a

willingness

on

the

part

of

local

HRS

personnel

to

facilitate

the

study,

and the

ease

of

finding quali

fied interviewers in each site. Together, these counties contain about 23%

of

the

state's

population.

In

each

county,

600

persons

were

selected

ini

tially,

with the

goal

of

actually interviewing

100

of them

in

each

county.

Each

name

and

address

selected

was

printed

and

distributed

to

trained

interviewers.

Altogether,

11

interviewers

were

used

in

conducting

the

survey:

three

in

Dade

County,

three

in

Hillsborough

County,

and five

in Leon

County.

Two

of

the

three

interviewers

in

Dade

County

were

bilingual.

In

Hills

borough

County provision

was

made

for

persons

who

spoke only

Spanish

to be interviewed at HRS facilities where

bilingual personnel

were avail

able.

In

addition,

interviewers

were

provided

with

a

Spanish

language

ver

sion

of

a

preliminary

draft

of

the

instrument.

Several

training

sessions

were

held for

interviewers.

At

these

sessions,

a

rationale

for

the

survey

was

pres

ented,

along

with

a

discussion

of the

organization

of the

instrument.

Each

interviewer

was

given

a

randomized

list of

names,

addresses and

suggested phone

numbers

(when available).

Whenever

possible,

they

were

also

given

the

name

of the client's social worker.

For

persons

living

in





123

BOBWELLER

group

or

institutional

quarters,

the

names

and

telephone

numbers of the

client's social

worker and of the

institution's

operator

were

also

provided

whenever

possible.

Each

interviewer

was

instructed

to

begin

with

the first

name

on

the list and

to

make

up

to

three

attempts

to contact

the

person

by

telephone

before

moving

on

to

the

next

name

on

the list.

If

the initial

contact

was

made

by telephone,

interviewers

were

instructed

to

explain

the

purpose

of the

survey

(in

general

terms),

conduct

the first

portion

of the

interview

designed

to

screen

the

respondents

to

make

sure

the

person

would qualify as developmental ly disabled, and, if so, to make an appoint

ment to

conduct

the

rest

of the

interview

personally

in

a

face-to-face fash

ion. If

no

telephone

number

was

provided,

the

interviewer

was

instructed

to

go

to

the address

listed

and

to

try

an

interview

if

the client

(or

a

suitable

surrogate)

could be located.

Consent forms

were

completed

and

signed

at

the

beginning

of the face-to-face

interview.

Institutionalized

clients

posed

special

in

the

sense

that

they

were

very

likely

to

need

a

surrogate

to

respond

to

the

questions,

some

of the

ques

tions

were

inappropriate,

and

some

of the

institutional

operators

were

re

luctant to

grant

access because of an

(unfounded)

fear that their

particular

institution would somehow be

evaluated

unfavorably,

or

because

provid

ing

sufficient

personnel

to

serve

as

surrogates

was

difficult. This

was

espe

cially

the

case

for

those

institutions

in

which

several clients

were

included

in

the

sample.

Nevertheless,

institutional

clients

may

be

slightly

overrepre

sented

in

the

sample

because of the

ease

with which

they

could

be

located.

The National

Association

of

Developmental

Disabilities

Councils

de

veloped

the

questionnaire

used

to

conduct the

interviews.

It

was

used

in

54 states and territories

as

part of the national effort mandated by Congress

(NADDC,

1990).

Few

questionnaires

are

perfect.

This

one

had

several

shortcomings.

Pretests

showed

it

did

not

do well with

children and

persons

who

are

mentally

handicapped.

The

use

of

parallel

instruments

(for

surro

gates

and

clients)

was

considered

by

the instrument's

designers

but

re

jected

because the

designers thought

it

would be

unwieldy.

Most

of

the

interviews conducted

in

Florida involved the

help

of

surrogates.

Unfor

tunately,

one

cannot

ascertain

the

extent

of

surrogate

participation

in

the

interview

process.

The

questionnaire

was

also

rather

long

and sometimes

contained difficult

language.

These

shortcomings

were

largely

offset

by

in

terviewer

training.

CHARACTERISTICS

OF

RESPONDENTS

Table

1

presents

descriptive

statistics

of

the

respondents.

Slightly

less

than

10%

are

preschool

ages,

and

19.7%

are

ages

0-14.

This

is

very

close





124

POPULATION

AND

ENVIRONMENT

TABLE 1

Selected

Sociodemographic

Characteristics of

Respondents

Characteristic

No.

Percent

Current

Age

0-4

5-9

10-14

15-19

20-24

25-29

30-34

35-39

40-49

50

+

Total

Gender

Male

Female

Total

Race/Ethnicity

White

Black

Hispanic

Other

Total

Marital Status

Never

married

Married

Sep.,

divorced

Widowed

Total

Surrogate's

Relationship

to

Client

Relative

Service

prov.

Other

No

surrogate

Total

Current

Place

of Residence

Single

family

home

Multifamily

home

Rooming

house

Congregate

care

Nursing

home

31

15

17

20

55

58

38

33

33

19

319

178

132

310

183

89

40

1

313

302

4

6

0

312

137

149

15

9

310

125

28

1

96

2

9.7%

4.7%

5.3%

6.3%

17.2%

18.2%

11.9%

10.3%

10.3%

6.0%

100.0%

57.4%

42.6%

100.0%

58.5%

28.4%

12.8%

0.3%

100.0%

96.8%

1.3%

1.9%

0.0%

100.0%

44.2%

48.1%

4.8%

2.9%

100.0%

41.3%

9.2%

0.3%

31.7%

0.7%





125

TABLE 1

(Continued)

BOBWELLER

Characteristic

No. Percent

Institution

51

Total

303

Number of

times

moved

in

past

five

years

None 189

One

66

Two 28

Three

12

Four+

10

Total 305

Place of birth

Florida 162

US,

not

Florida 61

Outside

US

20

Don't

know 31

Total 274

Ever

lived outside

Florida

Yes

79

No

146

Don't

know

45

Total

270

Major

reason

moved

to

Florida

Economic

9

Family

18

Environment

8

Services 5

Health,

retirement

1

Other

13

Don't

know

12

Total

66

16.8%

100.0%

62.0%

21.6%

9.2%

3.9%

3.3%

100.0%

59.1%

22.3%

7.3%

11.3%

100.0%

29.3%

54.1%

16.7%

100.0%

13.6%

27.3%

12.1%

7.6%

1.5%

19.7%

18.2%

100.0%

to

the 20.7%

ages

0-14

projected

for 1990

in

these three counties

by

Smith,

Ahmed

and Sincich

(1988).

The

sample

is

disproportionately (57%)

male.

By

contrast,

only

48%

of

the 1990

population

of these

three counties

(combined)

projected

by

Smith

et

al.

is

male.

This

is

consistent

with

re

search

suggesting

that

males

may

have

higher

prevalence

rates

than

fe

males

or

that

potentially

disabling

conditions

may

be

more severe

in

males

than

in

females

(LaPlante,

1988;

&

Verbrugge,

1982).

About

12%

of

the

respondents

identified

themselves

as

Hispanic,

28%

identified themselves

as

black,

and almost

60%

identified themselves

as

white. The

proportion





126

POPULATION

AND

ENVIRONMENT

TABLE 2

Educational

Experience

of

Respondents

Characteristic

No. Percent

Received

Early

intervention

Preschool

Elementary school

Junior

high/middle

school

High

school

Vocational

College

Homebound

Special

school

Unknown

Most

of education received

in

Special

school

(residential)

Special

school

(day)

Special

class,

regular

school

Regular

class,

regular

school

Homebound

Residential

facility

for

disabled

Residential

facility

for

mentally

il

Other

43

45

67

29

23

20

3

20

150

13

7

126

38

19

13

29

11

77

13.4%

14.1%

20.9%

9.1%

7.2%

6.3%

0.9%

6.3%

46.9%

4.1%

2.2%

39.4%

11.9%

5.9%

4.1%

9.1%

3.4%

10.5%

of these three counties (combined) that was Hispanic in 1990 has been

projected

as

30.4%

(Center,

1987).

Smith

et

al.

(1988)

project

the

propor

tion

black

in

1990

in

these three

counties

(combined)

as

20.5%.

These

figures

are

included

merely

to

provide

a

general

notion

of

how

the

popula

tion

of

respondents

compares

with the

general population.

Prevalence

rates

are

not

random but tend

to

vary

by

age,

sex,

and

ethnicity.

Thus

the

percent

distributions

of the

sample

and the

general population

will

not

necessarily

be

the

same.

Very

few

of

the

respondents

have

ever

been

married.

Only

2.9%

of

the

interviews

were

conducted

without the

help

of

a

surrogate.

In

over

90%

of the

cases,

the

surrogate

was

either

a

relative

or a

service

provider.

As

may

be

seen

in

Table

1,

slightly

more

than

half of the

sample

live

in

a

family

home.

Most

of

these

(41.3%

of

the

sample)

live

in

a

single family

home;

9.2%

of the

sample

live

in

a

multifamily

home.

Slightly

less

than

half

of the

respondents

live

in

some

sort

of

group

facility.

This breaks

down

as

31.7%

in

a

congregate

care

facility

and

16.8%

in

an

institution. The





127

BOB

WELLER

remaining

1

%

of the

respondents

live

in

a

nursing

home

(0.7%)

or

rooming

house

(0.3%).

Persons born outside of Florida

are

29.6%

of

the

sample.

The

propor

tion

born outside the

U.S. is

7.3%.

The four

leading

reasons

given

for

migration

are:

family,

other,

economic and environment.

"Services" is

not

given

as

a

reason

for

migration

to

Florida

by only

7.6%

of

the

respondents.

This

finding

is similar

to

that

obtained

in

an

earlier

study

of

applicants

to

HRS

Developmental

Services.

The educational

experience

of the

respondents

is

presented

in Table

2.

They

have

been

educated

in

a

variety

of

settings. Only

13.4%

have

received

early

intervention

and

only

14.1%

have

attended

preschool. Early

intervention

is

critical

to

prevent

further

problems

and

to

achieve

maxi

mum

development.

Yet

waiting

lists

are

long

and

programs

may

have

in

sufficient

resources,

especially

trained

professionals.

Many

day

care

pro

viders

do

not

accept

children with

special

needs

(NADDC,

1990).

Almost

half of the

respondents

have attended

a

special

school

or

program

with

no

grades.

This makes

it

impossible

to

compute

the

highest grade completed.

When

number of

years

of

schooling

is

calculated

by combining

number of

years

spent

in

each

type,

the

respondents

have

spent

an

average

of

7.2

years

in

school.

A

considerable

portion

of

the

respondents

report

that

most

of

their

schooling

took

place

in

a

special setting,

either

a

special

school

or

a

special

class

in

a

regular

school.

Only

5.9%

report

they

have

received

most

of

their

schooling

in

a

regular

class

in

a

regular

school.

This shows

segregation

of

developmental

ly

disabled

persons

in

the

public

educational

system.

It is consistent

with

a

federal

report that,

de

spite a federal law that requires students with disabilities to be served in

the "least

restrictive"

settings

possible,

some

states

exclude

more

than

two

thirds of

certain

disability

groups

from

regular

schools

(U.S.

Department

of

Education,

1985).

Nationally,

38%

of

the

children interviewed

as

part

of

the

consumer

survey

were

completely segregated

either

in

separate

build

ings,

residential schools

or

in

homebound

education

(NADDC,

1990).

Selected

disability

characteristics

of the

respondents

are

presented

in

Table

3.

Mental

retardation

is

the

major

primary

disability,

followed

by

cerebral

palsy.

The

high proportion

who

give

mental retardation

as

the

primary disability

may

be

due

to

a

tendency

of other

persons

to

label

de

velopmentally

disabled

persons

as

"retarded,"

either

because

they

are

"dif

ferent"

or

are

physically

unable

to

perform

satisfactorily

the

portions

of

intelligence

tests

that

require

manual

dexterity.

Also,

persons

who

are

clas

sified

as

mentally

retarded

may

qualify

for

federally

or

state

financed

serv

ices

more

easily

than

persons

with

other

developmental

ly

disabling

condi

tions.

However,

even

when

secondary

disabilities

are

taken into

account,





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129

BOBWELLER

the

proportion

with mental

retardation

is

very

high

relative

to

the other

conditions.

The

high

proportion

that

is

classified

as

mentally

retarded

may

also

be

partially

attributable

to

a

tendency

to

classify

severely

disabled

persons

as

mentally

retarded,

even

though

they

may

not

actually

be

men

tally

retarded.

Most

(56.9%)

of the

respondents

have

multiple

disabilities

(Jacobson

&

Janicki,

1983).

Altogether,

368

secondary

disabling

conditions

were

re

ported.

Only

one

disabling

condition

could be

recorded

as

the

primary

disabling

condition,

but itwas

possible

to have more than one

secondary

disabling

condition.

Following

the

suggestion

of the

DDPC,

disabilities

were

classified

as

physical

or

emotional/mental and

the

following

typology

was

developed:

1.

physical only

(this

includes

persons

with

only

one

disability

if it is

physical);

2.

physical primary

and

at

least

one

secondary

disabling

condition

that

is

emotional/mental;

3. emotional/mental primary and at least one secondary disabling condi

tion

that

is

physical;

and

4.

emotional/mental

only

(this

includes

persons

with

only

one

disability

if

it

is

emotional/mental).1

The

distribution of

cases

across

this

typology

may

be

seen

in

Table

3.

One-seventh of the

respondents

have

only

physical

disabilities. About half

of

these

persons

have

multiple

physical

disabling

conditions.

By

contrast,

37.2%

have

only

emotional/mental

disabling

conditions,

and

most

of

these

persons

had

only

one

such

condition. Almost

49%

had both physical and

emotional/mental

disabling

conditions.

Among

these

persons,

the

emo

tional/mental condition

is

over

6

times

as

likely

as

the

physical

condition

to

be

reported

as

the

"primary"

disabling

condition.

Slightly

more

than

10%

of the

clients

answer

yes

to

a

question

on

whether

they

belong

to

a

consumer/advocacy

group,

16.8%

report

that

someone

in

their home is

a

member

of

a

consumer/advocacy

group,

and

9.8%

report

that

someone

in

their

immediate

family

is

a

member of

such

a

group.

Altogether,

22.2%

of the

respondents

answer

positively

to

at

least

one of the

preceding

items

concerning

consumer

advocacy

group

member

ship.

following

the

suggestions

of the

DDPC,

the

following

conditions

were

classified

as emo

tional/mental

impairments:

autism,

emotional

(including

chronic

mental

illness),

epilepsy/

seizure

disorder,

head

injury,

mental

retardation,

other

neurological

impairment,

and

behav

ior

problems.

All other

primary

or

secondary

disabling

conditions

were

classified

as

physical.





130

POPULATION

AND ENVIRONMENT

FIGURE 1.

Independence, Integration

and

Productivity

Self

Perception

Scales.

INDEPENDENCE

INTEGRATION

PRODUCnVTTY

Mi

0.0% 100.0%

(1)

OTALLY

gg

(2) (3) (4) (5)

NOT

T

ALL

INDEPENDENCE,

INTEGRATION

AND

PRODUCTIVITY

The respondents report they need

a

lot of help. Few of them

are

capa

ble of

living

independently

without considerable

aid from

others.

When

asked how

much

assistance

they

need

in

self

care

(e.g.,

bathing,

grooming

and

eating),

55.2%

respond

"a

lot."

A

high

proportion

(58.5%)

report

needing

a

lot of

help

in

communicating

with and

understanding

others.

The

activity

with which the lowest

percent

(38.4%)

report

they

need

a

lot

of

help

is

personal

mobility

(excluding

transportation),

and

over

90%

re

port

needing

a

lot

of

help

with life

management,

in

living

on

their

own,

and

in

supporting

themselves

financially.

Thus,

this

population

needs

a

lot

of

help

in

doing

a

variety

of basic

things

that would be

necessary

for them

to

live

independently.

It

needs

assistance from

many

sources.

This

notion

is

reinforced

when

we

examine

measures

of

independ

ence.

The

respondents

perceive

that

they

exercise

little choice

in

matters

affecting

them

in

key

areas

of their

everyday

lives.

Although

71%

respond

that

they

choose their

friends and

acquaintances,

29%

respond they

do

not

make

this choice.

Likewise,

40.1% do

not

decide

what

to

buy

with their





131

BOBWELLER

spending

money,

40.2%

do

not

determine what clothes

to

wear,

43.1

%

do

not

determine

what their

weekend and

evening

activities will

be.

More

than

half do

not

exercise

choice

in

other

aspects

of

their lives.

As

may

be

seen

in

Figure

1,

over

42%

rate

themselves

as

"not

at

all"

independent

on

a

5

point

scale.

The

survey

data

also

show low

perceived

measures

of

productivity.

Half

of the

respondents

rated

themselves

as

"not

at

all"

productive.

Even

though

a

very

liberal definition of

working

(defined

to

include

day

and

training programs)

was

used,

only

27.3% of the

respondents

were

currently

working

and

only

a

slightly

higher

percentage

reported they

had

ever

worked. This

is consistent

with Bowe's

report

(1984)

that,

by

nearly

any

available

analysis,

two-thirds of

all

persons

with

disabilities

are

unem

ployed.

Likewise,

involvement

in

domestic

or

community

affairs

is

mini

mal,

and the

respondents

rate

themselves

as

fairly

unproductive

members

of

their

community.

The

respondents

fare

somewhat

better when

measures

of

integration

into

the mainstream of the community and society

are

considered. Al

though

only

5%

of

the

respondents reported

they

voted

in

the last

election,

more

than half of them

believed

they

engage

in

a

variety

of

activities

with

the

"right"

frequency.

One

must

be careful

in

interpreting

this

evaluation.

It

does

not

mean

they

do the

activity

frequently

(or

as

frequently

as a

per

son

not

classifiable

as

developmentally

disabled).

In

fact,

they

may

never

engage

in

a

particular activity.

It

merely

means

that

they

engage

in

a

par

ticular

activity

with

a

frequency they

believe

is

"right"

for

them.

The

aver

age

score

on

the scale

of

self-perceived integration

is

3.3,

much

lower

(and

hence more desirable) than the scores for

productivity

(4.0) and

independ

ence

(3.9).

Nevertheless,

over

one-third

of the

respondents

reported

them

selves

as

lonely,

less than

half

visit

regularly

with

friends who do

not

have

a

disability,

and almost

three-fourths

of

the

respondents

believe

that

most

of their

friends

are

developmental ly

disabled.

Generally,

the

respondents

in

this

survey

are

not

capable

of

independ

ent

living,

they

are

not

productive

members

of the

community,

and

they

are

segregated

from

its

mainstream.

This

is

very

consistent

with

Biklin's

(1988)

recent

characterization of the situation

of

disabled

persons

as exem

plifying

marginality.

Biklin

contends that

any

other

group

subjected

to

these circumstances

would

be

characterized

as a

minority

group.

How

ever,

the

tendency

has

been

to

view

persons

who

are

developmental

ly

disabled

as

(a)

victimized

by

a

disabling

condition

and

(b)

in

need

of

treat

ment.

He

believes

that

this

clinical

perspective

detracts

from

recognizing

that

persons

with

a

disability

need

rights.

This

keeps

disabled

persons

from





132

POPULATION

AND

ENVIRONMENT

FIGURE

2.

Client

Satisfaction

with Services.

0.0%

50.0%

100.0%

PERCENT

VERY

ATISFIED

g|

SATISFIED

|

NEUTRAL

?2

DISSATISFIED

||

VERY ISSATISFIED

being

seen as

a

minority

group.

Thus,

persons

who

are

disabled

are

per

ceived

as

suffering

from

their

disabilities

rather

than

from social

ostracism

and discrimination.

SATISFACTION

WITH SERVICES

Figure

2

presents

levels

of

satisfaction

for

various

types

of

services

currently

received,

regardless

of

programmatic

source.

The

respondents

were

asked

their

level

of satisfaction

with

95

services,

which

have

been

classified

into

eight general

categories.

The

number

of

cases

upon

which

the

percentages

are

based

is

not

the

number

of

persons

receiving

services.

Rather, it is the number of

services received.

Some

persons

received

none

of the

services

in

that

particular

group;

some

received

more

than

one.

The

type

of

service

most

frequently

received

is

health

services

(1135),

followed

by

individual

support

services

(1119)

and

transportation

services

(1002).

The

least

received

service

is

vocational

(194),

followed

by

caregiver

sup

port

services

(233)

and

residential

services

(315).

One

must

be careful

not

to

equate

higher

levels

of satisfaction

with

higher

levels of

service.

Higher

levels

of

service

may

increase

satisfaction





133

BOBWELLER

with

those

services.

Yet

satisfaction

is

also

a

function of the client's

expec

tations. When these

expectations

are

high, they

are

more

difficult

to

fulfill

and

hence

a

given

level of

service

may

be

more

likely

to

be

regarded

with

dissatisfaction.

Likewise,

it

may

be easier

to

meet

low

expectations,

and

persons

who

have low

expectations

may

be satisfied with

low

levels

of

service

received.

The

issue

of how much satisfaction should there be

also

makes the

subject

of satisfaction difficult

to

assess.

One is

faced with the

dilemma

of

choosing

between how full

or

how

empty

is

a

jar.

For

instance,

slightly more than three-fourths of the respondents report they are satisfied

with

life

in

general.

Yet

almost

one

out

of

every

four

respondents

do

not

report

they

are

satisfied

with

life

in

general.

The

same

situation exists

with

services the

respondent currently

receives.

Most

of the

reports

are

that

the

respondent

is

satisfied

with the

service.

Still,

there

is

room

for

improve

ment

because

some

clients

are

not

satisfied

with the

particular

service

they

are

receiving.

Moreover,

these

are

current

clients.

One

would

expect

cli

ents

who

are

dissatisfied with

services

to

be

less

likely

to

remain

clients

than

are

those

who

are

satisfied.

Hence

there

is

some

selectivity

involved.

Dissatisfaction

is

most

frequently reported

with

caregiver

support

serv

ices.

There,

one

out

of

ten

reports

are

that the client

is

"very

dissatisfied."

Another

21.3%

are

"dissatisfied/' Levels

of dissatisfaction

exceeded

10%

for

case

coordination

services,

health

services,

individual

support

services

and

transportation

services.

The

level of satisfaction

was

highest

for

resi

dential

services,

where

60.3%

were

"very

satisfied"

and

30.2%

were

"sat

isfied."

FACTORS ASSOCIATED

WITH

SERVICE

SATISFACTION

Because

the level

of

satisfaction

varies

from

person

to

person,

one

line

of

enquiry

is

the

examination

of whether

satisfaction

is

associated with the

client's characteristics. Different levels

of satisfaction

among

particular

types

of

persons

suggest

that

gaps

exist in

the

service

delivery

system

and

there

are

ways

in

which

it

can

be

improved

to

increase

overall

levels

of

client

satisfaction.

To

do

this,

a

summary

measure

has

been devised which

is

the chance that

a

service

which

is

received

is

regarded

as

"very

satisfac

tory"

or

"satisfactory."

For

each

respondent,

the

number

of services

re

ceived

was

counted,

as

was

the

number

of these which

were

satisfactory.2

By

calculating

these

in

percentage

terms

for

each

respondent,

it

is

possible

2For

literary

ease,

in the remainder

of

this

paper

satisfactory

means a

response

of

"very

satisfactory"

or

"satisfactory".





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135

BOB

WELLER

to

talk about

the chance that

a

person

who

receives

a

service is

satisfied

with

it.

This

is

a

total

measure

across

all

types

of service. Persons who

receive

many

services

are

considered

as

equal

to

those

who

receive

only

a

few.

Table

4

presents

a

matrix

of the

zero

order correlation coefficients of

factors that

may

be related

to

satisfaction with service. Four of

the correla

tions with

satisfaction

with

service

are

statistically significant:

age

of

client,

the client's

living

arrangement,

the number of services

received,

and

whether the person has emotional and

physical

disabilities.

Although

the

relationship

between

age

and

satisfaction

is

positive,

it is

nonlinear.

Closer

examination of the data reveals

that

the

chance of satisfaction

is

high

in

the

0-4

age group,

declines

to

the

10-14

age

group

and

then

increases,

reach

ing

a

plateau

around

age

25.

The

same

association

exists

when

educa

tional

services

are

excluded

from

consideration.

Adolescence

is

a

stressful

time for

all

persons

and

their families

be

cause

it

marks

a

transition

between

childhood and adulthood. Adolescents

are

uncertain

of what

behavior

is

appropriate

for them.

Persons

who

inter

act

with them

frequently

do

not

know whether

to

interact

with

them

as

children

or

as

adults.

This

creates

lower

levels

of

satisfaction

among

both

adolescents

and

the adults

around

them. Persons

who

are

developmentally

disabled

may

not

be different from other

persons

in

this

respect.

This

un

certainty

about

how

to

interact

and deal with

adolescents

may carry

over

to

the

service

providers.

Services

that

are

appropriate

for

younger

persons

may

be

inappropriate

for

adolescents,

and

there

may

be

a

time

lag

before

this

is

recognized.

Appropriate

modes of

service

delivery

may

be different

for adolescents than for younger persons. Thus, systems may be better at

providing

appropriate

services for

children

and

adults than for

persons

who

are

neither.

Finally,

young

children should have

joined

the

service

delivery

network

more

recently

than

adolescents.

They

may

be

more

grateful

to

be

receiving

any

services

or

they

may

be

less

aware

of the

system's

inade

quacies.

These

are

fruitful

lines

of future

inquiry.

Persons

living

in

a

family

setting

report

lower levels of satisfaction

than do

other

clients.

This

may

be due

to

higher

expectations

by

those

who

live

in

family settings

(or

their

surrogates). Also,

persons

in

family settings

may

actually

receive less services

that

are

needed and this

may

create

a

generalized

dissatisfaction

with

the

service

delivery

system.

Publicly

funded

services

are

less available

to

persons

in

a

family

setting.

Persons

who

live

in

families

may

have income

too

great

to meet

the

means

test.

Even if

no means

test

is

present,

case

workers

may

expect

the

family

to

assume

a

greater

share of

the

responsibility

for

providing

services. At

the

same

time,

private

services

may

strain

or

even

exceed the

economic,

psy





136

POPULATION

AND

ENVIRONMENT

TABLE

5

Multiple

Classification

Analysis

of

Predictors

of

Client Satisfaction

with

Services

No.

of

Cases

Unadj.

Mean

Eta

Adjusted

Mean

Beta

Age

0-4

5-14

15-24

25-39

40

+

Home

Family

Other

Numsr

0-14

15-19

20-24

25

+

Type

Phys.

only

Phys/Mental

Mental

only

All

Cases

0.33 0.20

29

28

71

127

45

147

153

93

99

57

51

36

186

78

300

Multiple

R

Squared

=

.214

Source of variation

Sum of

Squares

75.9%

65.9%

81.9%

86.9%

87.9%

89.9%

75.9%

82.9%

84.9%

80.9%

79.9%

74.9%

84.9%

80.9%

82.9%

DF

0.34

0.10

0.16

Mean

Square

80.9%

72.9%

80.9%

86.9%

83.9%

90.9%

75.9%

85.9%

85.9%

78.9%

75.9%

82.9%

83.9%

79.9%

0.37

0.21

0.08

Signif.

of

F

Main

effects

Age

Home

Numsr

Type

0.422

1.125

0.410

0.080

0.105

1.125

0.137

0.040

3.222

34.382

4.181

1.216

0.013

0.000

0.006

0.298

chological

and emotional

resources

of

the

family.

Also,

obtaining

needed

services

may

be

more

inconvenient

for

persons

living

in

a

family

setting

than

for

persons

in

a

setting

such

as

an

institution

because of the

need

to

transport

the

client

to

and

from the

provider.

Table

4

also shows that

per

sons

living

in

a

family

setting perceive

themselves

as more

independent,





137

BOB

WELLER

more

integrated

into

the

community

and

more

productive

than do

persons

who live

in

other

settings.

There

is

an

inverse

relationship

between

number of services

received

and

the

percent

of

services

received

satisfactorily.

Thus

persons

who

re

ceive

many

services

are

less

likely

to

be satisfied with the

services

they

receive

than

are

those who receive

only

a

few. This

may

be

due

to

many

factors.

Need

may

be

greater.

Alternatively,

it

may

be

easier to

overlook

shortcomings

in

one

service than

shortcomings

in

5

services.

Finally,

disability

type

seems to be related to likelihood of satisfaction.

Persons

who

have

at

least

one

physically

disabling

condition and

at

least

one

mental/emotionally

disabling

condition

are more

likely

than

other cli

ents to

report

satisfaction with services

received.

When

these variables

are

subjected

to

multivariate

analysis using

Mul

tiple

Classification

Analysis

(MCA),

a

form of

multiple

regression

suitable

for

categorical

variables,

they

explain

21%

of the variance

in

client satis

faction.

After controls

are

introduced

for

the other

three

variables,

living

arrangement

is

the

most

important predictor

of

satisfaction. Number

of

services

received

and

age

also

remain

important

predictors.

The

relation

ship

between

disability

type

and

service

satisfaction is

not

statistically sig

nificant.

Treating

age

and

number of services

received

as

continuous

vari

ables

produced

the

same

results:

age,

living

arrangement

and

number

of

services

received

are

statistically significant

predictors

of

satisfaction with

services

received.

CONCLUSIONS

Most

of

respondents

have

multiple

conditions. Almost half

report

both

a

physical

and

an

emotional/mental

condition.

This

means

that services

need

to

be

tailored

to

individual needs

rather than

to

program

slots

to

account

for

the

multiplicative

nature

of

multiple

conditions.

Levels

of

independence,

productivity

and

integration

into

the

main

stream

of

society

are

very

low for this

group.

Thus

clients

may

need

con

siderable

support

in

daily living

and

in

supporting

themselves.

Clients

are

only marginally

active

economically.

Some

barriers

to

greater

productivity

are

societal

and need

to

be removed.

Where barriers

to

greater

produc

tivity

are

not

societal

in nature

and

cannot

be

removed,

we

may

need

to

design

some

creative

ways

that

feelings

of

productivity

can

be

enhanced.

The

clients

are

in

effect

socially

segregated

from

society.

Greater inte

gration

can

be

produced

through

education

of

the

public,

increased

ac

cess,

supportive

services,

and

the

discouragement

of

discrimination. The





138

POPULATION

AND

ENVIRONMENT

recently

enacted

Americans

with Disabilities

Act is

a

promising

start

in

this

direction.

The

reasons

most

frequently

given

for

dissatisfaction with

services

cur

rently

received

are

inappropriateness

and

insufficiency

of

amount.

This

suggests

that

the

amount

of

services

needs

to

be

increased and

services

need

to

be tailored

to

meet

the

needs of the individual.

The

area

associated

with the

lowest levels of satisfaction

is

caregiver

support

services.

Florida

may

do

a

better

job

of

meeting

the

needs of the

individual client than those of his/her support system who provide care.

This

is

an area

in

which the

amount

and

appropriateness

of services

ex

tended needs

to

be increased.

A

number

of

fruitful

areas

for additional

inquiry

are

suggested

by

the

findings.

Adolescents

are

less

likely

than other

persons

to

be

satisfied with

the

services

which

are

received. This

may

be due

to

the

stress

associated

with

adolescence itself.

It

may

also be the

case

that the

service

delivery

system

does better

at

delivering

appropriate

services in

an

appropriate

fash

ion

to

children and

to

adults

than

it

does

to

persons

undergoing

the

change

from childhood

to

adulthood. Adolescence

is

a

period

when

self-identity

as

an

adult

emerges.

The

adolescent

may

feel

frustrated that the service

system

does

not

produce

a

self-identity

that

is

perfect.

The

greater

the number of services

a

client receives

the

greater

the

level

of dissatisfaction with services.

A

high

number of services

received

may

be

indicative

of the existence

of

a

situation

for which

simple

and

adequate

solutions

are

extremely

difficult

to

attain.

Need

may

be

greater.

Alternatively,

it

may

be

easier

to

overlook

shortcomings

in

one

service

than to overlook shortcomings in several services. Moreover, receipt of

services

may

raise

expectations

which,

if

unmet,

increase

levels of

dissat

isfaction.

Thus,

there

may

be

a

cumulative effect which is

transformed

into

an

expression

of

dissatisfaction.,

Finally,

persons

who live

in

a

family setting

are

less

likely

to

be satis

fied

with the services

they

receive

than

are

other

persons.

This

may

be

due

to

higher

levels of

expectations,

lower levels of

public funding

for

services,

or

the inconvenience of

obtaining

the

appropriate

services.

REFERENCES

Biklin,

D.

(1988).

The

Myth

of

clinical

judgement.

Journal

of

Social

Issues, 44,

127-140.

Bowe,

F.

(1984).

Demography

and

disability:

A

chartbook for

rehabilitation.

Fayetteville,

AR:

Arkansas Rehabilitation

Research and

Training

Center.





139

BOB

WELLER

Center

for

the

Study

of

Population.

(1987).

A

demographic study

of

persons

with

develop

mental disabilities

in

Florida,

Part

I,

Demand

analysis.

Tallahassee,

FL: Center

for the

Study

of

Population,

Florida

State

University.

Jacobson,

J.W.,

&

Janicki,

M.P.

(1983).

Observed

prevalence

of

multiple

developmental

dis

abilities.

Mental

Retardation, 21,

87-94.

LaPlante,

M.

(1988).

Data

on

disability

from

the National

Health

Interview

Survey,

1983-1985.

Washington,

D.C:

National

Institute

on

Disability

and

Rehabilitation

Re

search.

National

Association

of

Developmental

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(NADDC). (1990).

Forging

a

new

ERA:

The 1990

reports

on

people

with

developmental

disabilities.

Washington,

D.C:

National

Association of

Developmental

Disabilities

Councils.

Smith,

S.K.,

Ahmed,

B. &

Sincich,

F.

(1988).

Population

estimates and

projections

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age,

sex

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race

for Florida and

its

counties,

1987-2000.

Population

Studies,

Bulletin

No.

85-86.

Gainesville,

FL:

Bureau

of

Economic

and

Business

Research,

University

of

Flor

ida.

Tawney,

J.W.

&

Demchak,

M.S.

(1984).

Severely

retarded?

severely

handicapped?

multiply

handicapped?

A

definitional

analysis. Topics

in

Early

Childhood

Special

Education,

4,

1-18.

U.S.

Department

of

Education

(1985).

Seventy

annual

report

to

Congress

on

the

implementa

tion

of Public

Law

94-142:

The

education

for all

handicapped

children

act.

Washington,

D.C: U.S.

Department

of Education.

Verbrugge,

L.M.

(1982).

Sex

differentials

in

health. Public

Health

Reports,

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416-437.

Weller, R.H., Sly, D.F., Serow, W.J. & Micklin, M.M. (1989). A demographic study of per

sons

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developmental

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Florida.

Tallahassee,

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Florida

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