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GRASSROOTS EXPERIENCES WITH GOVERNMENT
PROGRAMS AND DISABILITY POLICY
Proceedings from a Public Hearing in New Orleans, Louisiana
National Council on Disability
October 1, 1998
National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004
202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax
This public domain document is also available in alternative
formats and on the Internet (http://www.ncd.gov).
The views contained in this report do not necessarily
represent those of the Administration, as this document has not
been subjected to the A-19 Executive Branch review process.
Please Note: It was beyond the scope of this project
for NCD to independently research and confirm statements made by
witnesses in our hearing. The statements and recommendations are
included as they were received at the hearing.
LETTER OF TRANSMITTAL
October 1, 1998
The President
The White House
Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD),
I am pleased to submit a report entitled Grassroots Experiences
with Government Programs and Disability Policy: Proceedings from
a Public Hearing in New Orleans, Louisiana.
The report is based on a public hearing NCD conducted
to learn about issues facing families of children and youth with
disabilities from minority and rural communities in Louisiana. Recognizing
society's general neglect of the needs of minorities, NCD has targeted
children and youth with disabilities from minority and rural communities
as one of its policy priorities.
Several recommendations for action by local, state,
and national policymakers emerged from the hearing. Although this
report attempts to capture the substance of the compelling testimony,
it is beyond the scope of this report for NCD independently to research
or verify what was said at the hearing. NCD elected to highlight
the voices from one state as a vehicle to draw lessons for public
policy and its impact at the local level.
NCD stands ready to work with you and stakeholders
outside the government to see that the needs of all Americans with
disabilities and their families are met.
Sincerely,
Marca Bristo
Chairperson
NCD MEMBERS AND STAFF
Members
Marca Bristo, Chairperson
Kate P. Wolters, Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Hughey Walker
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Andrew J. Imparato, General Counsel and Director of Policy
Mark S. Quigley, Public Affairs Specialist
Jamal Mazrui, Program Specialist
Kathleen A. Blank, Attorney/Program Specialist
Janice Mack, Administrative Officer
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
NCD SUBCOMMITTEE ON MINORITY ISSUES
Members
Hughey Walker, Chair
Lilliam Rangel-Diaz
Debra Robinson
Kate P. Wolters
Ela Yazzie-King
Staff
Jamal Mazrui, Program Specialist
TABLE OF CONTENTS
Congressional Mandate of the National
Council on Disability
Preface
Introduction
Education
Vocational Rehabilitation
Juvenile Justice System
Access to Medical Services
Economic Self-Sufficiency/Independent
Living
Family/Individual Support
Community Participation
Conclusion
Appendices
Participant List
References
CONGRESSIONAL MANDATE OF THE
NATIONAL COUNCIL ON DISABILITY
Overview and Purpose
NCD is an independent federal agency led by 15 members
appointed by the President of the United States and confirmed by
the U.S. Senate.
The overall purpose of NCD is to promote policies,
programs, practices, and procedures that guarantee equal opportunity
for all individuals with disabilities, regardless of the nature
or severity of the disability; and to empower individuals with disabilities
to achieve economic self-sufficiency, independent living, and inclusion
and integration into all aspects of society.
Specific Duties
The current statutory mandate of NCD includes the
following:
- Reviewing and evaluating, on a continuing basis,
policies, programs, practices, and procedures concerning individuals
with disabilities conducted or assisted by federal departments
and agencies, including programs established or assisted under
the Rehabilitation Act of 1973, as amended, or under the Developmental
Disabilities Assistance and Bill of Rights Act; as well as all
statutes and regulations pertaining to federal programs that assist
such individuals with disabilities, in order to assess the effectiveness
of such policies, programs, practices, procedures, statutes, and
regulations in meeting the needs of individuals with disabilities.
- Reviewing and evaluating, on a continuing basis,
new and emerging disability policy issues affecting individuals
with disabilities at the federal, state, and local levels, and
in the private sector, including the need for and coordination
of adult services, access to personal assistance services, school
reform efforts and the impact of such efforts on individuals with
disabilities, access to health care, and policies that operate
as disincentives for individuals to seek and retain employment.
- Making recommendations to the President, Congress,
the Secretary of Education, the Director of the National Institute
on Disability and Rehabilitation Research, and other officials
of federal agencies, respecting ways to better promote equal opportunity,
economic self-sufficiency, independent living, and inclusion and
integration into all aspects of society for Americans with disabilities.
- Providing Congress, on a continuing basis, advice,
recommendations, legislative proposals, and any additional information
that NCD or Congress deems appropriate.
- Gathering information about the implementation,
effectiveness, and impact of the Americans with Disabilities Act
of 1990 (42 U.S.C. 12101 et seq.).
- Advising the President, Congress, the Commissioner
of the Rehabilitation Services Administration, the Assistant Secretary
for Special Education and Rehabilitative Services within the Department
of Education, and the Director of the National Institute on Disability
and Rehabilitation Research on the development of the programs
to be carried out under the Rehabilitation Act of 1973, as amended.
- Providing advice to the Commissioner with respect
to the policies and conduct of the Rehabilitation Services Administration.
- Making recommendations to the Director of the National
Institute on Disability and Rehabilitation Research on ways to
improve research, service, administration, and the collection,
dissemination, and implementation of research findings affecting
persons with disabilities.
- Providing advice regarding priorities for the activities
of the Interagency Disability Coordinating Council and reviewing
the recommendations of this Council for legislative and administrative
changes to ensure that such recommendations are consistent with
the purposes of NCD to promote the full integration, independence,
and productivity of individuals with disabilities.
- Preparing and submitting to the President and Congress
an annual report titled National Disability Policy: A Progress
Report.
International
In 1995, NCD was designated by the Department of State
to be the official contact point with the U.S. government for disability
issues. Specifically, NCD interacts with the special rapporteur
of United Nations Commission for Social Development on disability
matters.
Consumers Served and Current Activities
While many government agencies deal with issues and
programs affecting people with disabilities, NCD is the only federal
agency charged with addressing, analyzing, and making recommendations
on issues of public policy that affect people with disabilities
regardless of age, disability type, perceived employment potential,
economic need, specific functional ability, status as a veteran,
or other individual circumstance. NCD recognizes its unique opportunity
to facilitate independent living, community integration, and employment
opportunities for people with disabilities by ensuring an informed
and coordinated approach to addressing the concerns of persons with
disabilities and eliminating barriers to their active participation
in community and family life.
NCD plays a major role in developing disability policy
in America. In fact, it was NCD that originally proposed what eventually
became the Americans with Disabilities Act (ADA). NCD's present
list of key issues includes improving personal assistance services,
promoting health care reform, including students with disabilities
in high-quality programs in typical neighborhood schools, promoting
equal employment and community housing opportunities, monitoring
the implementation of ADA, improving assistive technology, and ensuring
that persons with disabilities who are members of minority groups
fully participate in society.
Statutory History
NCD was initially established in 1978 as an advisory
board within the Department of Education (Public Law 95-602). The
Rehabilitation Act Amendments of 1984 (Public Law 98-221) transformed
NCD into an independent agency.
PREFACE
The National Council on Disability (NCD) is an independent
federal agency that makes recommendations to the President and Congress
on disability policy. Recognizing society's general neglect of the
needs of minorities, NCD has targeted children and youth with disabilities
from minority and rural communities as one of its policy priorities.
As a follow-up to findings in NCD's 1996 report Achieving
Independence: The Challenge for the 21st Century that key information
related to the rights and services available to people with disabilities
is not reaching a large segment of the American population, especially
people from minority and rural communities, NCD conducted a roundtable
discussion in Atlanta to address these critical issues. At the NCD
roundtable, several people called attention to the need for federal
enforcement and technical assistance to focus resources and initiatives
on educating people in minority communities about the requirements
of the Americans with Disabilities Act (ADA) and other federal disability
civil rights statutes and how to bring claims under these laws.
As a follow-up to the Atlanta meeting, NCD conducted
a hearing on the issues affecting children and youth with disabilities
from minority and rural communities in Louisiana on January 26,
1998, at the Hilton Riverside Hotel in New Orleans. Louisiana was
selected based on its National Composite Rank in the Annie E. Casey
Foundation 1997 KIDS COUNT Data Book, which provides policymakers
and citizens with benchmarks of child well-being. Although Louisiana
ranked last out of 50 states, NCD believes that it would have received
similar testimony from witnesses in other states. The KIDS COUNT
Data Book-a national and state-by- state effort to track the status
of children in the United States-uses the best available data to
measure the educational, social, economic, and physical well-being
of children.
In preparation for the hearing, NCD contacted local
advocates, people working to improve the lives of children and youth
in Louisiana, and staff members of the Office of Special Education
Programs, U.S. Department of Education. Hughey Walker, chair of
NCD's Subcommittee on Minority Issues, presided at the hearing and
expressed NCD's concerns related to education and disability issues,
juvenile justice issues, and youth with disabilities. Lilliam Rangel-Diaz,
a member of the Subcommittee on Minority Issues and co-chair of
NCD's Subcommittee on Children and Youth, gave a brief overview
of NCD and its mission. She also encouraged participants to openly
share their experiences.
Several recommendations for action on the part of
local, state, and national policymakers emerged from the hearing.
This report attempts to capture the substance of the compelling
testimony; it was prepared with the valuable assistance of Carol
Wilson, one of the parents who testified and helped to organize
the hearing. It is beyond the scope of this report for NCD to independently
research or modify what was said at the hearing. We have organized
what we heard in a manner that we hope will be useful to policymakers
at the federal, state, and local levels. We begin with the recommendations
we received. They include the following:
Education and Vocational Rehabilitation
- School boards need to make special education funding
and staffing a priority and establish a separate budget for the
dollars allocated for special education.
- School boards should take an honest look at the
evaluation process and technology access and improve the coordination
of those services.
- It is incumbent on school boards to devise and
enforce policies that will encourage more students with disabilities
to stay in school and ensure that every child who is eligible
to get a high school diploma has the opportunity to do so. Funding
select schools while ignoring other districts and closing enrollment
at select schools are barriers that need to be addressed.
- Family support and advocacy programs of diverse
cultural backgrounds should be encouraged and supported whenever
possible. Strong partnerships among student self- advocates, parents,
and the schools will build strong schools and promote community
involvement, which has been shown to improve school performance.
- At the state level, funding should be increased
for special education, teacher salaries, and to hire competent
certified special education teachers.
- Schools should be held accountable for following
state and federal guidelines and correcting deficiencies.
- The state Department of Education should increase
parent/school partnerships and move away from collaboration with
a select few to collaboration with all families. Public hearings
and conferences should be open and widely advertised in places
where all cultural segments of the population would be likely
to receive the information.
- Training for families should encompass all disabilities
and cultures and should be widely available. Families of diverse
cultural backgrounds and disability experiences should be actively
recruited and allowed to serve in leadership positions. Training
should include Section 504 and civil rights training and be more
effective in addressing the complaint and documentation process.
- The School-to-Work program should cooperate with
the Louisiana Statewide Transition Project to provide a better
array of services with available funding and to avoid overlapping
efforts in some areas.
- Increase outreach to rural areas in following the
provisions of Act 417 for universal screening of newborns for
hearing impairment.
- Advocates would like to see a greater federal involvement
with accountability measures for federally funded projects. Input
from a wide range of consumers who are the intended beneficiaries
of these projects would give a more accurate picture of how effective
the projects are.
- Congress should not pass any amendment that has
potential to weaken the Individuals with Disabilities Education
Act (IDEA). Testimony in this report indicates a lack of understanding
regarding students with disabilities, as well as continuing attitudinal
barriers of fear and prejudice, both in schools and among the
general public. Allowing school boards to expand disciplinary
practices would create more barriers to students with disabilities
receiving a free and appropriate public education.
- Incorporate specific language into child care initiatives
that will provide access to competent care for children with disabilities.
- Work toward an improvement in the communication
between the Department of Special Education and the Office of
Rehabilitation.
- Mandate extensive consumer and family involvement
in all phases of decision-making processes.
- Reauthorize the Technology-related Assistance for
Individuals with Disabilities Act (Tech Act).
- Improve the access of elementary and secondary
children to Section 504 services and ensure that all parents receive
training on their rights and responsibilities with regard to Section
504.
Juvenile Justice
- Local, state, and federal officials should collaborate
and make it a priority to eradicate abuse and to protect the safety
and civil rights of those in juvenile justice facilities.
- Forge community partnerships that will address
the problems already known to increase juvenile delinquency, such
as lack of access to mental health treatment services and to after-school
child care.
- Review ways to address the economic structure in
rural communities to eliminate prisons and detention centers as
engines of economic opportunity.
- Plan and promote a campaign to educate and inform
the general public and policymakers about the realities of juveniles
with disabilities, particularly mental health problems.
- By providing access to a full range of treatment
options, eliminate the necessity for families of children with
a mental health disability to declare their child ungovernable
in order to have access to intensive residential options.
- Strongly resist attempts to pass state and federal
legislation in the name of fear or convenience that will weaken
the protection of juveniles with disabilities in the juvenile
justice system.
- Improve access to education and health care in
juvenile justice facilities.
- Make effective rehabilitation the rule and not
the exception.
Access to Medical Services
- Enact legislation that provides for consumer protections
and considers the needs of people with chronic health conditions.
Mandate an advisory council to provide quality assurance controls.
This council should include consumers and families representative
of the major disability categories (i.e., developmental disability,
chronic illness, injury, and brain disorders or mental illness).
- Ensure that the Office for Civil Rights in the
Departments of Health and Hospitals in all federal regions have
funding and staff to investigate complaints of violations.
- Establish a commission of local, state, and federal
policymakers, consumer/family advocates, and community leaders
to explore options for financial management of chronic health
conditions. Enact legislation that will ensure that insurance
companies in America will provide benefits for managing these
conditions.
- Enact federal comprehensive mental health parity
legislation that will provide protections for employers and employees
so that the discrimination against persons with psychiatric disabilities
can end and the government will not be forced to pick up the costs
for the majority of these people because of a lack of adequate
private insurance coverage.
- Mandate genetic screening of newborns to determine
chromosomal anomalies not readily apparent and ensure that insurance
companies can not use such results to discriminate against people
who have these conditions. Many of these anomalies have been documented
to be costly in terms of quality of life and the treatment for
their manifestations when they remain undiagnosed and no interventions
are provided. Early screening can lead to early intervention services
to improve outcomes, treat the anomaly, and enhance the general
quality of life.
- Mandate the Tax Equity and Fiscal Responsibility
Act as a formal part of Medicaid instead of allowing it to continue
as a state option.
- Proactively eliminate and punish fraud and abuse
of the Medicaid system, particularly by providers. Examine the
disproportionate share hospital funding and the profit schemes
in Louisiana that were not direct violations of the law and thus
led to losses that could not be recouped. Devise a method whereby
personal profiteering can be eliminated.
- Fund and support total wraparound services for
children and youth with mental disabilities (e.g., serious emotional
disturbances). Tailor the system to meet the needs of the consumer
instead of requiring the consumer to meet the needs of the system.
Provide a full range of treatment options and multidisciplinary
cooperation that is consumer driven and directed.
- Solicit consumer and family involvement in all
stages of health care provision. Foster and actively promote family
and consumer involvement and pay these people for their services
as any professional would be compensated.
- Fund consumer- and family-driven health advocacy
groups to do training across the country on Medicaid, health insurance,
family/professional collaboration, and consumer rights and responsibilities.
- When conducting federal investigations of state
departments of health, mental health, developmental disabilities,
and Medicaid, actively solicit input from consumers and families
from a broad spectrum of cultures, geographic regions, and disabilities.
Use family- and consumer-driven health advocacy groups to locate
these individuals. Fund those groups to train and compensate consumers
and families for surveying other consumers and families to obtain
more accurate data.
- Louisiana state officials and the legislature should
make it a priority to fund the developmental disability waiver
slots and search for ways to move the more than 10,000 people
off the waiting lists. Reports of preventable deaths of consumers
because of a lack of services while on a waiting list demand that
the system be closely examined to find ways to prevent this in
the future. Investigate a voucher system that would allow the
limited dollars to provide services for more people.
- Louisiana Medicaid and the legislature should raise
the provider reimbursement rates at least to the Southern Conference
standard. Also examine ways to make the Early and Periodic Screening,
Diagnosis, and Treatment (EPSDT) rates equitable when compared
with the developmental disability waiver rates.
- Enact minimum training requirements for those who
provide direct care and support services. In particular, develop
a training, licensing, and accreditation system for paraprofessionals.
At present, the psychiatric technicians who work in the state
hospitals are required to have only a general equivalency degree
(GED) and the physical ability to put someone in restraints. Reports
of abuse and violations of civil rights are grave concerns and
need to be addressed. Make sure all training addresses divers
ity of race, disability, and creed. Invite consumers and families
to participate in such training and compensate them, to ensure
that service providers hear the message that services should be
provided in the most respectful, least intrusive way possible
and that all services should be consumer driven and directed.
- Improve coordination of care across all systems.
Promote multidisciplinary team approaches that are consumer driven
and directed.
- Overhaul the current psychiatric hospital system,
in which youth of all diagnoses are put together and often participate
in the same treatment plans or group therapies. Just as one would
not use the same treatment for a patient with a heart condition
and a patient with cancer, it does not make sense to use the same
treatment for a youth with bipolar disorder or schizophrenia and
a youth suffering from a behavior disorder or emotional disturbances
due to severe and repeated abuse. Treatment for mental health
disabilities is more than medication and should include a total
individualized recovery model.
- Revitalize the current psychiatric hospital system
to allow for the safety of the patients and staff while creating
a more family-centered approach to care. Locking children and
youth away from loving families and friends at such a frightening
and difficult time is not in their best emotional interests.
- Make it illegal for states to require families
to relinquish custody of their children to obtain intensive mental
health services and treatments for them.
- Closely examine the funding streams and find ways
to eliminate cost shifting between the state and federal governments.
- Examine ways to improve the delivery and quality
of services to rural areas. Investigate ways to attract providers
to these areas.
Economic Self-Sufficiency/ Independent Living
- For those who meet the Supplemental Security Income
(SSI) definition of disability, separate the requirement of a
cash SSI payment from access to Medicaid.
- Encourage independent living and shift funding
from costly institutional care to community-based services.
- Make a concentrated effort to let employers know
that the Americans with Disabilities Act and the Family and Medical
Leave Act do protect the rights of those with mental health disabilities.
- Increase the federal minimum wage.
- Promote and fund programs such as Partners in Policymaking.
- Increase funding for Independent Living Centers.
Family/Individual Support
- Louisiana should invest itself in the funding and
success of Act 378, the Family and Community Support Services
provision.
- Launch a national campaign to improve the delivery
of community and family/consumer support services across the country.
- Adequately fund providers of community and family
support who meet strict requirements that will prevent abuse and
fraud.
- All support should be consumer/family driven and
directed as well as culturally competent and respectful.
- Investigate ways to provide skills training and
medical services to families in which single parents and others
must leave the workforce to care for the child or youth with a
disability.
- Solicit input on quality assurance from families
and consumers. Involve families and consumers in all stages of
support, from planning to implementation.
Community Participation
- Encourage community summits to discuss the issues
and create innovative solutions. Include persons with disabilities
and ask them what their issues and concerns are.
- Use the media to portray the truth about persons
with disabilities and to lessen the stigma and attitudinal barriers.
- Foster collaboration and partnerships of government,
service providers, businesses, and other stakeholders in the community.
- Hold leadership training for youth with disabilities
and provide them with mentors and opportunities to learn to be
self-advocates.
INTRODUCTION
Hughey Walker, chair of the National Council on Disability's
(NCD) Subcommittee on Minority Issues, opened the hearing by stating
that NCD was particularly interested in hearing about the issues
affecting Louisiana youth with disabilities and their families.
He expressed the hope that NCD would be able to gather information
on children and youth from minority backgrounds and rural communities
in Louisiana that would help NCD in its work. He discussed NCD's
long-standing commitment to minority issues.
Mr. Walker informed those present that in preparation
for the hearing, NCD had contacted local advocates and people working
to improve the lives of children and youth in Louisiana, as well
as staff in the Office of Special Education Programs at the U.S.
Department of Education in Washington, D.C. He expressed the concerns
of NCD as related to education and disability issues, juvenile justice
issues, and youth with disabilities.
Lilliam Rangel-Diaz, a member of the Subcommittee
on Minority Issues and co-chair of the NCD Subcommittee on Children
and Youth, gave a brief overview of NCD and its mission. She encouraged
those present to openly share their experiences.
EDUCATION
NCD expressed concerns about surrounding education
for those with disabilities in Louisiana that were identified after
federal monitoring by the U.S. Department of Education. Problems
include the following:
- Special transition programs are not fully in place,
especially with students moving from school to work for higher
education;
- Invitations to transition meetings often lack necessary
information;
- Attendance at transition meetings is inadequate;
- Written and prime notice to parents and the required
content of the notice are inadequate;
- Attendance at Individualized Education Plan (IEP)
meetings, especially by supervisors who could approve or disapprove
the expenditure of funds, is poor;
- The state fails to make individual determination
of services and placement; and
- The state fails to force correction of these deficiencies.
The hearing testimony confirmed these concerns as
well as others. Families, persons with disabilities, officials,
and advocates spoke openly of their challenges and successes as
well as what is and is not working within the systems.
High School Completion
Witnesses at the hearing expressed concerns that while
the national average for youth with disabilities to complete high
school is about 38 percent, approximately 54 percent of Louisiana
youth do not complete high school. In Louisiana, only 15 percent
of all children with disabilities will receive a high school diploma,
and 60 percent of youth with serious emotional disturbances drop
out of school between grades 9 and 12. Various reasons were given
for this. According to Mary Shanks, a representative for the Advocacy
Center for the Elderly and Disabled (ACED), Louisiana's federal
protection and advocacy program:
In recent years, there has been a backlash against
violence in the schools, which has resulted in more Zero Tolerance
Programs, which are used to prevent students with disabilities
from receiving an education.... Often the damage caused by lengthy
removals cannot be undone. The vast majority of youth with disabilities
in the state drop out of school before earning a diploma or certificate.
The clear message they continue to receive from the school system
is that they are not wanted or welcome if they are unable to easily
fit into the large middle school or senior high school settings.
These problems have been compounded by a lack of specificity in
the federal and state law, which have permitted local school systems
to impose discipline in a variety of in appropriate ways.
Financial/Legal Issues with the Individuals with Disabilities
Education Act (IDEA)
The Department of Education's Office of Civil Rights
has investigated and found an overrepresentation of minority students
in special education, particularly in E/BD programs, throughout
Louisiana. Students from minority groups who exhibit behavior problems
are placed in special education first, before other interventions
and modifications are explored. For many minority students, the
environmental conditions that cause delays are not addressed adequately
through early intervention. The issue is currently being addressed
through the Office of Civil Rights. Ms. Shanks touched on these
concerns in her testimony:
...IDEA was amended to provide additional specific
directions to school systems about the procedures they must follow
if they discipline students with disabilities.... Unfortunately,
in this state, the law has not been implemented by most school
systems, who have been led to believe that they can wait a year
or more until detailed regulations are finalized before they must
begin protecting the rights of students with disabilities. The
Advocacy Center has made it a priority to deliver the message
loud and clear to all school systems that they must follow the
law this year and they cannot continue to remove students with
disabilities from school for extended periods of time. This issue
affects thousands of students already in special education, as
well as those that should qualify of being suspected of having
these disabilities. Particularly in large urban districts, many
such students are ignored and are never referred for services
they need in order to learn. Not surprisingly, this contributes
to behavior problems, which are then solved by expelling the students
or encouraging them to drop out, thus depriving them of education
opportunities that will prepare them for life.
The schools and parents expressed concerns about the
safety of children designated medically fragile as well as for the
safety of the other children. A student who is ventilator- dependent
must have oxygen at school and in transport, which entails hazards
that must be guarded against. The funding attached to IDEA is not
sufficient to protect children against these safety hazards. Although
schools have received more funding this year, additional money is
needed to ensure the provision of services that students need. The
number of medically fragile students who are medically fragile who
were once on homebound or hospital instruction is increasing. Dr.
Rosalynne B. Dennis stated:
If you could just get through all of the medical
needs, to ensure that they're safe at school, and that the personnel
who work with them are fully trained. And that takes a lot more
than $400 and whatever it is per child.
Federal money attached to IDEA and the slightly more
than $2,000 per child from the State Department of Education through
minimum foundation funding are not enough to address the special
health needs of children in the schools. The funds go into the general
fund of each district's budget and provide the teacher, the classroom,
lights, maintenance, and limited paraprofessional services. The
funds will not stretch to cover child-specific items for those with
disabilities. Officials in special education do not receive the
funds directly nor do they have much input as to how the funds are
spent. Recent deep budget cuts in many districts have hurt special
education more than any other area of education.
The school systems were reported to be doing only
the minimum required by the Federal Government. With no federal
mandate on timelines to provide specific evaluations, services,
or assistive technology, services are put off until families threaten
lawsuits. One child was reported to have been in the education system
for two years with his disability, and yet the parents are still
struggling to have him evaluated for an augmentative communication
device. A private agency across the state from the family's rural
home will do an evaluation for $400. The agency told the family
that if the school board would pay for it, the cost would be $250.
The school board delays the evaluation process with, "We don't have
the staff. We have a long waiting list of children needing to be
evaluated." For many families, the system is not working well.
Early Identification and Intervention
Research has shown that when children with challenges
are identified in the early years and provided with intervention
services, there is a decrease in disabling factors that can hinder
school performance. More children are living in poverty in Louisiana
than in any other state, according to the Louisiana Kids Count
report prepared by Agenda for Children in conjunction with the Annie
E. Casey Foundation. Many of these children are not being identified
until they enter school, and many live in rural areas and in populations
representative of the ethnic minorities that comprise 30 percent
of the state's population and are predominantly African American,
Asian American, Hispanic American, and Native American. Even in
cases of early identification, families often have limited or no
access to intervention services.
Child Net is the early intervention program in Louisiana
for the birth-to-three-year-old population. The schools currently
do not provide daily instructional services for infants and toddlers,
but they do assessments in accordance with the state's Child Net
regulations. The children are evaluated, then the family receives
an infant/family service plan that follows them to various community
agencies and nurseries that provide those services. Children with
obvious disabilities, such as developmental disabilities and intense
medical needs, are generally identified early and connected to Child
Net. Infants and toddlers with less obvious disabilities are not
as easily identified. Families are not always aware of the programs,
and often, particularly in rural areas, there is a lack of service
providers and a growing lack of assistive technology.
Louisiana State Senator Paulette Irons mentioned a
member of her staff who has a child with a hearing impairment. Senator
Irons was candid enough to say that her staff member had the weight
of a state senate office behind her to help her locate services
and early interventions for her child. Now, more and more children
with hearing impairments are being identified and referred to services
sooner. Act 417, the Early Identification Act, is a new Louisiana
law that provides for the use of new technology for universal screening
of children's hearing at birth, rather than waiting to discover
the hearing impairments when the children have not begun to speak
by age two. Although the statewide program promotes universal screening
in the metropolitan areas, some of the rural hospitals are not identifying
infants with a hearing impairment as quickly because they still
do a paper screening before the hearing test.
There are many parish education programs for children
whose hearing impairment has been identified. Specialists go into
the parishes to work with the early intervention teachers and provide
resources. Sometimes the specialist is the main teacher; in metropolitan
areas, the specialist is a resource in a larger program. Because
hearing impairment is a low-incidence disability, in rural areas
it is difficult to gather enough students to make a class and find
a certified or qualified teacher. Another problem for minority groups
and in those rural areas is finding culturally competent interpreters.
According to Juliette Haynes of the Parent/Pupil Program of the
Louisiana School for the Deaf,
To have a true language accessibility and stimulation
for the mainstreamÄI'm talking about in the cafeteria, performances,
recess, all that sort of thingÄto have a true language model for
these people, you need interpreters.
Sandra Dodgins Barney, an audience member and single
adoptive/foster parent of children with disabilities, stressed the
importance of specific language being written into the new child
care initiative for children with disabilities. She expressed the
opinion that family day core homes should have resources available
to them to facilitate the inclusion of children with special needs:
Creative financingÄallowing funding from multiple
sources and prorating the cost among several childrenÄcould assist
in more children being included in family day homes. Standards
need to be revised that would ensure that children in family day
care would have the opportunity to develop to their fullest extent.
That's back to what I mentioned earlier about kids in poverty,
kids who are in environmentally delaying situations. They're not
developing appropriately, so we end up with them in special ed.
Transition Planning
After early intervention at the infant and toddler
level and by the student's third birthday, children are transitioned
into preschool programs. Louisiana then provides educational services
for all students with disabilities, ages 3 through 21. If a student
turns 21 after the first day of school, services continue through
the 22 birthday. Self esteem issues can be a major factor in students'
dropping out of school, as few wish to stay in school years longer
than their same-age peers. Students with disabilities are often
frustrated by negative social experiences and a lack of high school
options, so they move into the adult world ill-prepared because
of deficits in transition planning.
The Louisiana Statewide Transition Project (LSTP)
is a five-year project to address the particular needs of persons
with disabilities in transition from youth to adulthood and to seek
ways to remedy problems. The programs for persons with developmental
disabilities have improved over the years as a result of major advocacy
on the part of those affected, but the need for much work is needed
for persons with other disabilities. Forging a partnership between
LSTP and the federal School-to-Work program has been a challenge
in Louisiana. Dr. Dennis mentioned the program and voiced the common
misconception in the state that School-to-Work is basically a regular
education program. Advocates experience great difficulty in getting
across the School-to-Work message that "all means all."
In Louisiana, some special education teachers are
unaware that it is a federal mandate for a transition plan to be
in place for all youth ages 14 or older who are in special education.
Teachers sometimes tell parents who ask for a transition plan for
their students with a special education classification and IEP that
the plan is done only for students in an alternative program and
not those in specially designed regular instruction. Transition
plans are often sketchy and do not adequately address all life areas.
The state has been exploring implementation of a self-advocacy
program to prepare students in special education to make their own
decisions and take responsibility for the direction of their lives.
Some parents expressed concerns about this program being presented
through the schools without enough discussion, involvement, and
collaboration between families and the education system to effectively
implement the project with the total support of families. Too many
questions now exist in families' minds that have not been answered
satisfactorily, particularly given that the schools are not even
accomplishing the basics.
At the secondary level, community-based education
programs, such as the Alternate Lifeskills Program (ALP), exist
to provide students with functional living skills. Many students
are assigned worksites where they can be trained for employment.
Before leaving school, the students obtain paid employment and continue
in that employment. The community is an excellent resource in providing
work locations and job training sites for secondary students.
While ALP works very well for those with moderate
to severe developmental disabilities, it is too often the only choice
available for students with certain disabilities who would require
intensive modifications and supports to earn a high school diploma.
The program is weak on academics and does not provide a high school
diploma or training to prepare to take the General Equivalency Degree
(GED) examination. Although the ALP was intended only for students
incapable of receiving a high school diploma or GED, academically
capable students are placed in the program because of problems associated
with the lack of certified personnel or the unwillingness of the
regular education classroom teachers to work with these students.
(Note: In March 1998, two
months after this hearing, special information meetings were held
throughout the state by the Louisiana Department of Education Division
of Special Populations. The meetings centered on the IDEA changes
were to go into effect in July 1998 and included the information
that there would be no more diploma and certificate tracks in special
education for students with the cognitive abilities to obtain a
diploma or GED training. Only children with the most severe developmental
disabilities will receive a certificate. All other students, regardless
of disabilities or accommodations needed, will receive equal opportunity
to obtain a high school diploma. Officials have assured parents
of children with E/BD and other classifications that their children,
in accordance with federal mandates, will receive appropriate modifications
and interventions. The new IEP form each child must have has an
entire page devoted to modifications and accommodations. Although
they see this as a positive step, parents and advocates will be
keeping their eyes and ears open to ensure that the law is carried
out in schools across the state, knowing there is often a vast difference
between what should be done and what actually is done.)
Earlene Roth, a member of New Orleans Mayor Marc Morial's
advisory board, expressed concerns about high numbers of IEPs in
which the students are not working on a diploma. She asked Dr. Dennis
why the only jobs were menial positions and no mention was made
of young people training to be doctors or lawyers. Schools did not
accept the responsibility to provide work experiences for those
capable of attaining professional employment because professionals
with disabilities can provide this sort of mentoring on their own,
and the feeling is that the most seriously disabled, those who are
unable to receive this type of professional training, should receive
the limited services available. Dr. Dennis and Senator Irons stated
their position that the community must take the responsibility to
make up for the deficits found in schools and must begin to provide
positive role models for the youth. Members of NCD reminded the
officials that although these are worthwhile goals, they do not
negate the responsibilities of the state to these children and youth
to provide a free and appropriate public education and appropriate
rehabilitative services.
Section 504 Accommodations
If students meet the criteria for exceptionality under
Louisiana Bulletin 1508, the special Education Department will provide
services for them. Exceptionality under Bulletin 1508 is linked
to a student's intelligence quotient (IQ). Children who have severe
cognitive impairments and severe speech and language delays, physical
delays, and occupational delays, and who would benefit from speech,
physical, and occupational therapies are denied those services under
Bulletin 1508 because their eligibility for services is tied to
their IQ. This contributes to many students' being denied access
to support services that could enhance their lives, as it is rarely
made known to families that these services could be covered under
a 504 Accommodation Plan. Students with disabilities that require
modification but do not meet Bulletin 1508 criteria, such as attention
deficit disorder (ADD) or certain learning disabilities, can receive
services under Section 504 from another department not always current
in the provisions under 504 for students below college level, if
the parents are aware of their legal rights and how to obtain them.
Students with ADD and other 504 needs are not being adequately served,
and few parents are aware of how Section 504 of the Vocational Rehabilitation
Act can be used to gain needed support services.
Parent Training and Information Project
A member of NCD asked participants if the family training
and information project, called Families Helping Families (FHF)
in Louisiana, offered parents training on how to file complaints
with the Louisiana Department of Education and the Office of Civil
Rights to obtain legal rights and, if so, how many complaints had
been filed or resolved. Participants responded that instructions
given to parents were mainly to make phone calls to the Louisiana
Department of Special Education and to document them. No training
was provided on how to write letters to these offices or on the
rights afforded through the law.
Problems with the complaint process included the reluctance
of families to follow through because of the fear of exposing their
children to vulnerability while in the care of school personnel.
Reported incidents of children being subjected to punitive practices
at school when parents have taken action concern families greatly.
This promotes silence because there is a lack of comprehensive training
in many areas on how to address complaints to the Office of Civil
Rights about possible retaliation or other civil liberty issues.
It is highly unlikely that enough complaints are getting to the
Louisiana Department of Education, and it is very probable that
even fewer are being received by the federal Office of Civil Rights
because of the prevailing misconception that the Office of Civil
Rights deals only with cultural minority issues.
When asked by NCD whether local PTIs had experienced
difficulty with contacts with federal efforts to train parents on
the new provisions of IDEA, participants responded that parents
were being given the U.S. Department of Education training packets.
Jane Baker, the FHF parent trainer on the panel, never clearly answered
regarding the amount of local contact with federal training for
families and she said had not personally attended or conducted such
training. She further reported that the understanding of FHF was
that the training was not that different than what they had been
doing and was "merely updating the law."
Many people expressed concerns that in some regions
FHF was not being as responsive as it should be to minority children,
children from low-income families, or children with specific disabilities
such as E/BD. Concerns included that those in the administrative
positions of FHF are not representative of cultural minorities,
that salaries at the administrative level are very high compared
with the services available, that parents truly representative of
youth with E/BD are not on staff at FHF, that parents working there
do not always have an adequate grasp of the needs of families from
culturally diverse backgrounds or of those coping with a child with
E/BD, that many resource centers are not in easily accessible locations,
and that some centers do not keep sufficient hours to assist families.
Families who had worked for FHF expressed appreciation
for the information they had received that they would not have had
access to if they had not been on the FHF staff, but no explanation
was given as to why such information was not readily available to
other families. The Louisiana State Planning Council for Developmental
DisabilitiesÄalong with other state agencies such as Children's
Special Health Services (CSHS) and the Office of Mental Health Children's
ServicesÄpartially funds FHF. Some families were grateful that the
Planning Council quickly reimbursed (through FHF) individuals and
families representative of those with developmental disabilities
for their time and expenses devoted to training and were grateful
for the tremendous assistance this population receives from FHF.
Tech Act Project
Members of NCD asked if certain federal programs,
particularly the Tech Act project, were helpful at the grassroots
level as many participants testified to the difficulty of obtaining
certain needed devices such as augmentative communication aids.
The federally funded Tech Act project in Louisiana is known as Louisiana
Assistive Technology Access Network (LATAN) and has a representative
in each region of the state who can be accessed through the local
FHF. LATAN is an awareness program that tells people where information
can be accessed through other organizations. How to fund the technology
is often not clear, and when school systems purchase the devices,
they may be reluctant to send them home or may have no one trained
in how to use the technology.
Although it is a challenge for projects such as LATAN
to be consumer driven, in Louisiana, LATAN chose to implement an
option under the Tech Act to become an independent, nonprofit corporation
with an all-consumer board of directors. According to Guy Leaf,
a parent and a person with a disability,
We're one of only two in the United States that
has done that. It's helped us to really understand at the grassroots
the needs of consumers: what they need, what they want, and not
just systems change, which occurs so, so slowly, but direct, physical,
tangible relief for their immediate needs.
Mr. Leaf urged NCD support of the reauthorization
of the Tech Act as the 10-year mandate is about to expire. Emphasizing
the importance of the Act, he spoke in terms of cultural diversity
in Louisiana.
I would just like to answer an earlier question
that was asked about cultural diversity here in Louisiana, and
particularly, how our Tech Act approaches that. There is probably
no state in the union that has such great cultural and geographic
diversity as Louisiana. That's one of the reasons why it's nice
to visit here. We have to try and preserve our cultural diversity.
My son and I are descended from the French settlers who settled
New Orleans, the French Creoles. And the Canadian refugees who
came from Acadia, and settled the Acadian part of southwest Louisiana.
We're very proud of that heritage. We wouldn't want to change
it. But, in terms of cultural outreach, it creates great problems,
particularly for projects like the Tech Act Project.... We do
try to remember the need to be culturally competent, to speak
all the languages of our various cultural diversity populations.
VOCATIONAL REHABILITATION
Chanise Dennis, a graduate student preparing to pursue
a career in rehabilitative services and a young woman with renal
disease, expressed appreciation for the opportunities that the Vocational
Rehabilitation Act had afforded her in being able to attend school.
When asked about his experiences with vocational rehabilitation
services, Rodney Senigaur, a college student with paraplegia, replied
that his problems consisted of being considered a member of his
parents' household and under their income. As a result, he was not
eligible for various services when the evaluators did an in-home
assessment. In Louisiana, the money does not meet the need for vocational
rehabilitation; therefore, only those with the most serious disabilities
and greatest economic need qualify for services easily. Although
he did receive vocational rehabilitation services eventually, the
only funding Mr. Senigaur received was for his undergraduate schooling
and some for graduate school. No support services were provided.
When asked how his disability had affected his college career, Mr.
Senigaur replied:
Well, since I was injured in college, when I was
able-bodied in college, you know, as teenagers do, we live a carefree
lifestyle. I was doing quite well in school, but yet I was enjoying
the other benefits of life. And since I've been disabled, I do
appreciate everything now, and I do put everything in perspective.
I guess the main thing that I could stress would be that, in spite
of your disability, you can still overcome these various barriers.
It does really make you persevere. And, you can be as resilient
as you want to be. Having the support factors in your lifeÄwhether
it be family, friends, loved ones, having a spiritual foundationÄyou
can accomplish any goals that you set for yourself.
Mr. Senigaur expressed concern about the speed at
which accommodations are provided to students with disabilities.
He felt the time it takes the administration to complete the process
and develop the proper equipment to help is too lengthy. Another
student added that various institutions should be made accountable
for not being up to the standards:
I've known times when I needed a computer, or some
other type of device to help me within my class, or a tape recorder,
or something, and by the time I got it, the semester was almost
over. And this put me at a disadvantage with everybody else. So,
it made it just that much more of a struggle, to try to keep up
and not get behind. So, that needs to be addressed, making some
of the accommodations more speedy. And that, I think, will also
help a lot of students in school as well.
Aran Kundu, a college rehabilitation counselor in
the audience, expressed concern about the lack of communication
in Washington between the Office of Special Education Programs and
the Rehabilitation Services Administration. Although on the same
floor, the two departments do not communicate wellÄchildren with
special needs are growing up to become adults with special needs
and are not making the smooth transition from youth services to
adult services. NCD members shared their concerns about the transition
needs of students identified for special education, which is more
of an entitlement system, who then have to move to an adult service
system that is not an entitlement system but an eligibility system.
Although colleges and universities receive money from
the Federal Government and are covered by Section 504 and the American
with Disabilities Act (ADA), they often do not provide adequate
support services when students need services for a class or examination.
An NCD member noted the responsibility under ADA and 504 for the
colleges and universities to provide for students who are not sent
by vocational rehabilitation so that any student with a disability
has access to needed services, regardless of whether a vocational
rehabilitation counselor is involved in that student's education
or work rehabilitation plan.
JUVENILE JUSTICE SYSTEM
The Office of Civil Rights in the U.S. Department
of Education recently investigated the juvenile justice system in
Louisiana and found poor conditions for all youth within those facilities,
including a lack of concern about safety and abuse issues. The Office
found that special education needs were not being met at all for
students with disabilities in the juvenile detention centers. Officials
spoke of the opinions of some decision makers in Louisiana regarding
these issues. Dr. Dennis reported:
I don't know anything about the safety, but let
me speak to education in the state. I tried to pass a bill where
we would educate kids that were being housed until they go to
trial... and the response from the committee basically was, "We
can't educate good kids; why should we educate bad kids?"
Senator Irons added:
Now, the next thing we have to understand, that
just like in rural areas throughout this country, prisons are
economic engines in small communities. There really is no incentive
to educate people or to rehabilitate anybody in prison, because
then we will not be able to employ the individuals that live in
those rural areas.
Mental Health Treatment Needs
Shannon Robshaw, executive director of the Mental
Health Association in Louisiana (MHAL), testified that a Department
of Justice report found that Louisiana youth with mental health
needs are in danger in the current juvenile justice system. The
report found that mental health problems at Swanson and Tallulah
secure facilities posed serious risks of harm to the juveniles confined
there; that youth with suicidal tendencies and youth engaging in
self-mutilation are disciplined with segregated isolation; that
juveniles with mental disabilities were inappropriately placed in
secure facilities; that youths with extensive psychiatric histories
who self-mutilate or threaten suicide are never referred to a psychiatrist;
that psychotropic medications are managed inadequately; and that
numerous suicide hazards are found throughout the facilities.
Figures from the state juvenile authorities showed
that from 1992 to 1996, the number of youth in Louisiana's Office
of Youth Development (OYD) custody and supervision increased from
7,494 to 9,333 (more than 24 percent); that in FY96, OYD spent more
than $70 million to house and rehabilitate juvenile offenders, a
36 percent increase over the FY94 budget; and that OYD increased
secure beds by 113 percent from 1994 to 1997.
MHAL has identified juvenile justice as a top advocacy
priority for 1998 because youth involvement with juvenile justice
is often a result of the failure to provide treatment services to
youth with mental health needs. According to the U.S. Department
of Justice, approximately 60 percent of the nation's teenagers in
juvenile detention have behavioral, mental, or emotional disorders.
MHAL has recommended that the state provide more programs aimed
at preventing juvenile crime; these programs may not only reduce
juvenile crime rates but also the cost of the juvenile justice system.
Research has proven that comprehensive, coordinated, community-based
mental health services for youth reduce violations of the law; improve
how children behave and function emotionally; improve school performance;
and reduce the number of costly hospital and out-of-home residential
treatment placements.
(Note: In March 1997, the
Louisiana State Supreme Court heard testimony that a bill passed
by the Louisiana legislature in the previous session was unconstitutional.
The law allowed juveniles to be transferred from juvenile detention
centers to adult facilities upon turning 17 in an effort to relieve
overcrowding. The State Supreme Court ruled that the law violated
the civil rights of juveniles who had been adjudicated as youth
and not tried as adults and that it did not satisfactorily protect
these youth from harm. In defense of the bill he authored, Representative
Steve Windhorst of Terrytown was quoted in The Times-Picayune
as saying that, as a prosecuting attorney, he knew the realities
of these juveniles and "They're just not lovely children, they really
are not.")
Testimony related the difficulties of Verlyn Boyd,
the co-director of the Louisiana Federation of Families for Children's
Mental Health, who has been a strong and active advocate for her
son since he was diagnosed at the age of seven with onset of childhood
schizophrenia. Now 14 and an African-American male who is large
for his age, he has enough difficulty processing his environment
without processing others' actions and reactions because of persistent
stereotypes and prejudices. Behaviors were expected of him based
on his appearance that he was not capable of because of his disability.
As a result of impaired judgment related to his disability, he had
an incident with the law and is now in the juvenile justice system.
In highlighting the difficulties in obtaining medical
treatment and necessary services for mental health issues (covered
in depth later in this report), participants pointed out that often
families have no other option but to place their children in the
juvenile justice system. Parents are instructed that to get help
they must declare their youth (some as young as eight years of age)
ungovernable and go before a juvenile court judge in the hope of
receiving court-mandated treatment. The youth are ordered into the
custody of the OYD and placed in juvenile detention centers for
treatment and rehabilitation, a very inappropriate placement. Carol
Wilson, a parent advocate and state coordinator with Family Voices,
expressed her concern about this procedure:
If your child...does not get into the juvenile
justice system on their own, they [service providers] tell you
that, you can go to court and have your child declared an ungovernable
juvenile, and that also is reprehensible to me, because these
children are not ungovernable. They have brain disorders, and
a brain is a part of the body also. The brain controls what we
think and what we feel and how we perceive our world, and it can
have a disability. These children, many times, have bizarre behaviors
that we're not comfortable with, and if you are from an ethnic
minority population, your problem is compounded because you're
considered, "Oh, all Latinos are hot-blooded," or "All blacks
get into trouble," or "That's just that bad kid; that's the race."
An audience member identified herself as Brenda Valteau,
the president of the Louisiana State Foster Parents Association,
and stated that too many young people are going to jail, or are
homeless. Her concern was that too many children from ethnic minorities
are in the juvenile justice system through lack of appropriate care
and treatment.
I visited the Youth Studies Center recently....
It's a center to hold kids until after the court hearing, and
out of all the young people I saw there, most of them were males,
black males.... Our kids fall behind, because...there's not enough
people to help them, assist them, and then they become behavior
problems...as a result of not being able to have someone help
them to get up to par, academically. So, we're losing a lot of
children. Especially...kids in the foster care system.
Federal Legislation
Mental health and child/family advocates brought to
the attention of NCD a bill (S. 10) that is being heard in Congress
this session. The bill calls for the elimination of most of the
funding for preventive and rehabilitative programs for youth. It
weakens the language dramatically on the issue of disproportionate
representation of minorities in the juvenile justice system. S.10
eliminates the language requiring deinstitutionalization of youth
with disabilities and has the potential to perpetuate and worsen
the damage done to youth with disabilities in the juvenile justice
system.
ACCESS TO MEDICAL SERVICES
All Americans, particularly those with disabilities
or chronic illness, need affordable health care that is accessible.
People with disabilities face many obstacles in accessing health
care, including denial or cancellation of insurance, insufficient
benefits, preexisting condition exclusions, and being locked into
or out of employment.
SSI and Insurance
The Boykins, a middle-class family from a rural area,
quickly depleted their medical insurance after their son was diagnosed
with multiple and severe disabilities and was in the hospital for
seven months. In the hospital, they were able to access Supplemental
Security Income (SSI) for their son, but as soon as they left the
hospital, he was removed from SSI. They are in the appeals process
while continuing to receive Medicaid, but they have discovered that
because of the low reimbursement rates for Medicaid providers, the
same doctors who formerly gave first-class care under private health
insurance now provide only the bare minimum of medical services.
The family did not have the resources to obtain legal
representation and its income was too high to qualify for the pro
bono projects or legal assistance. After contacting ACED for assistance
with the SSI appeals process, the family received a letter saying
that ACED could not help with their son's appeal because it was
"not on their priority list." Most issues on the priority list,
appear to be concerned with enforcing public compliance with ADA
accessibility requirements, and there are a few class action suits
for selected concerns. Legal assistance to individuals is virtually
nonexistent. If family members are strong advocates, ACED intake
workers inform them that because they are knowledgeable and better
advocates than many others, they do not need assistance.
Children's Special Health Services (CSHS)
The Boykin family was able to access Children's Special
Health Services (CSHS) in Louisiana, where they feel services are
a little more personal, but the availability of services is limited
in rural areas. A specialist comes to the clinic only once a month,
and if the child is sick or cannot make an appointment, the appointment
is canceled or rescheduled for another month. There is also no full-time
staff at the CSHS clinics. Phyllis Landry, the statewide parent
coordinator for CSHS, was present in the audience and explained
that doctors are not on contract with CSHS. The doctors receive
only $300 as an honorarium, no matter how many patients they see,
and that can range from 1 to 45 per clinic day. The doctors volunteer
to work with the approximately 11,000 children with special health
needs seen in the nine regional clinics.
Tax Equity and Fiscal Responsibility Act (TEFRA)
The Boykins, like many others, were informed that
the only way they could receive SSI was to institutionalize their
son because the Medicaid option of the Tax Equity Fiscal Responsibility
Act (TEFRA or Katie Beckett waiver) is currently unavailable in
Louisiana. This waiver provides a Medicaid card by waiving the income
of parents if their child has a disability severe enough to receive
treatment in a medical facility but can receive more cost-effective
treatment in the home. In 1995, it seemed Louisiana would have a
TEFRA program, officials with the Louisiana Department of Health
and Hospitals (DHH) and the Louisiana Medicaid office incorrectly
insisted to families, agencies, and advocates that TEFRA excludes
people with mental disorders. TEFRA was not implemented because
of the serious problems uncovered that year in the Medicaid system
in Louisiana and the shortfall of funds.
Many people expressed the desire for see the Federal
Government to mandate TEFRA in the states as instead of leaving
it as a Medicaid option or to separate receiving an SSI cash payment
from a disability determination for Medicaid. Under one of these
approaches, families more concerned with the Medicaid card than
the SSI cash payment could have equal access to Medicaid. According
to Richard Boykin, a parent,
Of course, as you can see, Forrest [his son] meets
the disability criteria of SSI, but he does not meet the eligibility
of SSI because his eligibility is based on my income. Who is this
unfair to? Me? Or is this unfair to Forrest?
Medicaid Issues
Insulin needles at one time were not covered in Louisiana
under Medicaid because they were deemed drug paraphernalia. The
glucometer to measure the blood sugar of a child with diabetes was
not covered at one time either. Karen Divinity, a presenting parent,
along with the New Orleans Legal Assistance Corporation, successfully
pursued a class action lawsuit to gain coverage of these needed
medical supplies.
Karen Higginbotham, a parent, testified that her child
was on SSI and also the Louisiana Medicaid Developmental Disability
(DD) home-and-community-based services waiver, which provides personal
care assistance, respite, home modifications, and other unusual
support services. All those on the waiver program expressed their
appreciation for the services and support they receive. However,
Louisiana has a problem serving those who need such a waiver, as
more than 10,000 applicants are on the waiver waiting list. There
are presently 200 new slots approved through the last legislative
session, bringing the total to 340 of heretofore unfilled slots
for the Medicaid waiver. When someone leaves a Medicaid slot, it
remains open and unfilled, creating a total of 600 open slots. The
Louisiana DHH administration has stated to agencies and families
that it doesn't have the manpower to process the applications and
fill that many openings.
Youth aged 21 and under on the waiting list who have
Medicaid cards can use the Early and Periodic Screening, Diagnosis,
and Treatment (EPSDT) program to access services such as personal
care assistance and respite, but the state Medicaid reimbursement
rate for providers of EPSDT services is about half the rate for
providers serving those on the waiver. Consequently, providers are
refusing to provide the services under EPSDT. Complaints persist
that Louisiana Medicaid ignores EPSDT provisions in providing treatment
to those with mental health disorders. EPSDT is little understood
and mostly believed to be a preventive program. No family training
is currently being done in the state regarding advocacy issues for
EPSDT and Medicaid services, and people are often not aware of the
federal mandates, their protections, or consumer rights and recourse.
Rural Access
In rural areas, access to specialists is limited.
Most families travel long distances to metropolitan areas at a great
cost in time, stress, and money. According to Ms. Higginbotham,
Opelousas is in St. Landry Parish, one of the largest
geographical parishes in Louisiana. Specialized heath care and
therapy, even support groups for children with disabilities, are
quite limited, usually requiring a trip out of town. Many of the
pediatric specialists Alison sees or has seen are located either
in New Orleans or Baton Rouge. These specialists usually hold
clinics in other cities but not in our parish, which can and does
present problems with limited or lack of transportation as an
issue. A plus is that these specialists, as well as the pediatrician
in Opelousas, usually do take Medicaid, which provides her health
care.... The faraway hospitalizations require long hours on the
road, as well as leaving our other children and incurring meal
and lodging expenses. Having to drive out of town for medical
appointments can also be time consuming, especially when I worked
full time. Out-of-town medical appointments are also hard on Dustin
(a sibling), especially since he often has to come along or be
left behind with a babysitter.
Because a physical therapist is not on staff in the
rural school, children receive those services during school hours
at the area cerebral palsy clinic. Although bus transportation is
provided to the clinic, some choose to drive their children there
to limit the time the children are away from school. Transportation
to other appointments continues to be a major difficulty in these
areas. Ms. Higginbotham continued:
Although we live in the largest town in St. Landry
Parish, there are families only a few miles from us who experience
hardship with having limited or no of transportation to and from
medical and therapy appointments. Locally, it can be difficult
to get physical and occupational therapy. That is because there
is no one locally who specializes in pediatric physical therapy
and occupational therapy and would feel comfortable with a child
with disabilities. It is also a problem because, although some
physical and occupational therapists may take Medicaid, they do
so on a very, very, very limited basis. Personal care assistants
and respite workers are usually unwilling to drive from their
base, which is usually in Lafayette, to towns and communities
outside of Lafayette. I have gone from agency to agency for personal
care assistants and respite services until an agency opened up
in my town. This agency has a local pool of workers to draw from.
Parental Medical Needs
Although the child with a disability may qualify for
SSI and Medicaid, there typically are no medical services for the
parents, who often must leave the full-time work force to care for
their child and who often find their health deteriorating in response
to the added stress. This is an important issue, especially in low-income,
single-parent families where the parent must devote a large portion
of time to caring for his or her children, accessing needed services,
and advocating for reforms. Ms. Divinity testified:
I don't have a Medicaid card. Ranel has one, but
I don't. I have to seek for places to take care of me, because
I'm an African-American woman and being subject to the things
of age, like diabetes, high blood pressureÄall of those things
that come along with being impoverished and stressed. And believe
me when I tell you, when you have a chronically ill person, whether
it is your child, your mother, your brother, your sister, believe
me when I tell you there is some stress in that household, and
everybody has to live with the stress, so everybody needs care.
But there are literally no services available for the parent who
chooses to stay home and take care of that child. There is no
Medicaid card for me.
Mental Health
Children with mental health disabilities are discriminated
against regardless of their race, creed, economic status, or place
of residence. Ms. Robshaw of MHAL, which also sponsors the Mental
Health Reform Coalition of advocacy organizations working to change
the prospects of those with mental health disabilities in Louisiana,
spoke on the problems faced in the state:
We know that what works for these children is community-based,
comprehensive, wraparound mental health services.... That means
working with the schools, foster care, juvenile justice. It's
working with the parents and the families; it's providing in-home
crisis intervention and in-home support. Family therapy. School-based
counseling. All those thingsÄthose are the things that we, in
fact, know work for children, and have been proven over and over
and over again, to improve school performance, to reduce violations
of the law, to reduce the number and length of hospital stays.
To keep families intact to improve functioning and emotional stability
of the child.... The problem is that basically in Louisiana, children
are not getting these services.
The driving force behind this lack of community-based
mental health services is the federal funding stream. Medicaid requires
the state to match federal Medicaid dollars with state dollars for
community-based mental health services, but pays 100 percent of
the cost of inpatient mental health services for children. This
provides a financial incentive to the state to minimize community-based
services and maximize hospital services.
According to Louisiana's DHH Office of Mental Health,
86 percent of children with serious emotional disturbances in Louisiana
receive no treatment or services. Financial constraints are the
primary reason children in Louisiana are not receiving treatment
for their mental disorders. Only 6 percent of the DHH public dollars
go to the Office of Mental Health to serve both adults and children.
The majority of these scarce dollars are being spent in institutions.
Louisiana has four times the national average of children's beds
in its public mental hospitals.
Only in the arena of mental health disabilities are
parents told to give up custody of their children to the state of
Louisiana in order to receive medical treatment and services. The
children then go into a burgeoning foster care system where many
still do not receive services because the services often are not
available. Another option is for families to go to court and swear
out a complaint that their child is a juvenile in need of care (ungovernable).
Judges have the authority to mandate treatment, but when there is
no treatment into which to order the youth, the judges, in frustration,
order the children into the custody of the OYD and, more recently,
into the custody of DHH, which is not a very helpful solution in
most cases. The entire process is light-years behind the rest of
the disability community. The trauma experienced by these children
and families is unimaginable. The state may save a few dollars,
but the cost in human life is tragic.
Dual Diagnoses with Mental Health
When there are dual diagnoses and one diagnosis is
a mental health disorder, there is even more cost-shifting between
various systems as to who will care for the child. Ms. Wilson testified
about the experience of Doug Wilson, her 16-year-old son who has
a neurobiological brain disorder and XXY, or Klinefelter Syndrome
(a common, though rarely correctly diagnosed, genetic disorder affecting
1 in 600 live male births and causing one or more additional X chromosomes).
The difficulty in locating treatment for both his conditions has
been compounded because the majority of males with XXY require hormone
replacement therapy (HRT) because their bodies do not produce sufficient
amounts of testosterone. Males with XXY who are from minorities
or who are psychiatrically diagnosed are often denied HRT because
of the strong prejudice sometimes found in the deep south that precludes
necessary appropriate treatments as well as the lack of awareness
of current research on the treatment of XXY. While spending 16 months
in the state psychiatric hospital (at the expense of federal disproportionate
share hospital funds) because of a lack of community services and
comprehensive medical treatment, Doug wrote:
Every day I ask myself, "What's wrong with me?
Why does it have to happen to me?" I never did drugs or alcohol,
although I have this disease. Every day it eats away my brain
cells. Day by day, I get weaker and dysfunctional. I'm only 15,
only I can't do the things I used to do. I can't hardly speak
any more. Can't think or do my work in school. I don't even understand
what people are saying when they are talking to me. I used to
ace subjects in school, except English. I used to could read and
spell. I used to could figure out word problems, puzzles, stuff
like that. And I can't anymore. Deep down inside, it breaks my
heart that I can't do stuff like that anymore. I know from the
beginning that you all said you're trying to understand me better.
Well, I'm finally opening up to you. Here's what you need to do
to help me. I need occupational therapy, physical therapy, speech
therapy, stuff like that. I think we all should work towards me
getting rehabilitated, so I'll be able to function as I used to.
Will you help me, please?
Fortunately, after meeting with several specialists,
the family identified a multidisciplinary team willing to work together
to meet all the young man's specialized health needs. He is now
home and in the community receiving true wraparound services. He
was able to receive adequate medical treatment for both his conditions
as a result of the assistance and the commitment of national organizations
such as Family Voices and Klinefelter Syndrome and Associates to
address the needs of families, as well as through extraordinary
power advocacy efforts on a national scale. His parents bore the
burden of $300 to $500 monthly telephone bills for several months
in major attempts to locate information, support, and assistance
that was limited or unavailable in Louisiana. Few youth in the state
are as fortunate.
Protection and Advocacy (P&A)
Questions from NCD on the accessibility of federally
funded P&A programs generated the information that attempts
to go through ACED have been frustrating largely because family
and consumer issues are not high priorities with ACED, the process
is too long, and the screening process even to speak with an attorney
is often difficult and not consumer friendly. A few years ago, there
was a successful ACED class action lawsuit in response to Louisiana's
cutting waiver services by 32 percent for respite and personal care
assistance and cutting money going into institutional care between
5 percent and 7 percent. Services were restored to those individuals
as a result. A class action lawsuit has been filed by ACED on behalf
of those on the DD home-and-community-based services waiver waiting
list who were not being informed of or receiving EPSDT services
through Medicaid if they had a Medicaid card already.
Ms. Shanks of ACED reported that ACED is working to
ensure that Medicaid services are provided to all eligible children
with disabilities. ACED is involved in representing children with
disabilities in the juvenile court system, group homes, and psychiatric
treatment facilities. An issue of particular focus and concern for
ACED in the past several years involves the discipline of students
with disabilities.
For individuals with disabilities, Medicaid or Medicare
is usually the only means for health care, durable medical equipment,
and assistive technology. A resolution for was presented asking
Congress to enact comprehensive health insurance goals. The definition
of health care should be expanded from the absence of disease and
impairment to include management of a chronic illness or disability.
If a funding source for management for chronic illness could be
identified that would distribute health care costs equally throughout
the population, the Medicaid system would not be overburdened. Unfortunately,
Medicaid is associated with being destitute. A concern about how
fraud and abuse are hurting those in need of services was voiced,
along with a suggestion to continue to implement steps to eliminate
fraud and abuse in Medicaid and Medicare.
ECONOMIC SELF SUFFICIENCY/INDEPENDENT
LIVING
Parents need economic transition support when their
child grows up and moves toward independence. When parents have
devoted years to caring for a child with a chronic health condition,
they find themselves noncompetitive in the job market. Parents feel
strongly that they should be paid to effectively advocate for others
and to train others on how to advocate for children with special
needs. The emphasis was placed on parents and individuals having
become professionals through the school of experience and the need
for them to continue doing what they know best while being adequately
compensated for it. Working as advocates would also allow parents
flexibility in their scheduling needs when caring for their children.
Ms. Divinity advocated for such resourceful use of parents:
When you have [an advocacy] position open, call
someone like us to do it. And pay us to do it. You know, because
we eat the same things you do. We want to drive a car just like
you do. We want the same thingÄI have to use most of [my daughter's]
check to pay for her education. Thank God I have relatives that
give me a place to live, and all I have to be responsible for
is utility bills. And thank God for those four hours I can work.
But I would certainly not mind doing this (advocacy), as opposed
to what I'm doing, and letting my talents go to waste.
Because discipline procedures are not consistent and
there is a lack of adequately trained teachers and assistants in
day care programs and schools for children with mental, emotional,
and behavioral concerns, parents are often called from work to take
their children home. This causes problems and many people lose their
jobs or experience difficulty in locating a job that will allow
them flexibility. Several advocates knew of families who were told
by employers that the Family and Medical Leave Act was not intended
to cover mental health disorders and who were fired rather than
being granted medical leave from their jobs to deal with a crisis
precipitated by a child's brain disorder. With welfare reform sweeping
the country, families are concerned that when they cannot hold jobs
or are not afforded the protections of the Family and Medical Leave
Act, they will find themselves with no jobs and no assistance. Families
would rather work than be on public assistance, but the way the
system is devised leaves many with few options. Myra Edwards, a
parent and staff member of Families Helping Families, stated:
There are many parents who are sitting at home,
or on jobs, or being called away from their jobs because of their
children's behaviors. We need on a national level the support
of training and some things that need to go on in school, regardless
of what our children's needs are. Regular education, special education,
whatever it is. We need to keep our jobs, so we can maintain our
family and our homes. A lot of us are single parents. We also
need for agencies to fund family-run and parent-run support....
Foster parents of children with special health needs
reported that although there are supposed to be programs in place
to assist them when they take children with special health needs,
the plan often does not translate into reality. These families make
a commitment to raising these children in state custody so the children
will not have to live in institutions, but the promised support
does not come through in time or is insufficient to meet the needs.
Foster families face some of the same issues as birth families,
and they are told by DHH to depend on social services from the foster
care agency to provide for all the children's needs. Yet other child-serving
agencies are reluctant to use any of their resources for children
in foster care because the assumption is made that the Office of
Community Services is providing for these children's needs. There
is also a limited amount of funds to serve all children, so there
is a shifting of fiscal responsibility between agencies as opposed
to collaborative efforts to address all the needs of all children.
Also attested to were the needs of middle-income families
who make too much to qualify for public assistance and yet not enough
to cover the high costs associated with raising a child with a disability.
Families reportedly have lost their life savings, children's college
funds, homes, and cars. Families make deep and hard sacrifices to
provide for their children and to keep them in the home. Families
who pay for insurance that is discriminatory and inadequate or that
quickly caps out repeatedly fall through the cracks of the system.
Independent Living
Individuals with disabilities expressed their concerns
that to be gainfully employed, some would have to be provided with
transportation or assisted with personal grooming. Most affected
are those in rural areas where public transportation is limited
and there are few providers of personal care services.
Michael Johnson, a student with vision impairment
who had worked before becoming disabled, was fortunate to get about
$900 a month in Social Security Disability Income (SSDI), although
he mentioned that was only a small part of what he used to make
and only a small part of what he could earn when he finished his
studies.
I barely get $900 a month. I was used to living
on that almost in two weeks. So that... took a whole change in
my life, to take what I'm making in two weeks and try to stretch
it for a month. My bills did not change; they only increased.
People with disabilities encounterÄtheir cost of living is much
higher than people with nondisabilities. First, we have to make
arrangements for almost everything that comesÄthat we have to
attend. Just as today, I had to make preparation...to attend this
function here today. If I were nondisabled all I would have to
do is gas my car up and come down. But it takes more. Those are
just small things. With...the subsidies, too, they've got it set
up where if I were even to decide to start a savings, if my bank
account gets tooÄtoo much, they will cut me back. It's almost
like they don't want you to advance. That needs to be addressed.
Even if I would decide to take a wife. I mean, my check would
also be cut as well. They call that an increase of income. I can't
figure that one.
All the college students with disabilities who spoke
seemed to be under the impression that they would lose their medical
benefits if they became gainfully employed at professional levels
and lost their SSI or SSDI. They did not seem to have been informed
about the protection in the programs that would allow them to keep
their medical benefits as long as they needed them. They felt limited
in their choices of employment because of their particular disabilities
and the limited access to technology, but even more so because of
fear of losing medical benefits.
Louisiana has three independent living centers that
provide services. One is in New Orleans with a satellite office
in Baton Rouge; one is in Lafayette with a satellite office in Lake
Charles; and one is in north Louisiana in Shreveport. The total
state funding for independent living services is $190,000, which
basically covers running the program. Four core services are provided:
advocacy, independent living skills, information and referral, and
peer counseling.
FAMILY/INDIVIDUAL SUPPORT
Partners in Policymaking (PIP) is an eight-year-old
leadership training program for adults with disabilities and parents
of young children with disabilities. It is currently totally funded
by the Louisiana State Planning Council on Developmental Disabilities.
The program is limited, mainly because of budget cuts, to 25 individuals
trained each year. That number has been decreased from the initial
35 persons per year. Agnes Anderson, the director of the program,
spoke of a personal commitment to work on budgeting current resources
to return to training 35 people in 1998. That would entail many
cuts and constraints, but the hope is it will not affect the training
of the individuals.
The program is a quality tool provided so people meeting
the challenges of disabilities not only can go forth as good personal
advocates but also can reach out to other persons in the community
and share the information gained from the program. The main focus
of PIP is to fully implement person-centered planning for all persons
in Louisiana and to empower advocates to be able to speak for what
they need, what is best for their household, and what is best for
them.
Because of training provided at PIP, families got
together in Louisiana in 1989 and ensured the development, passage,
and enactment of Act 378, which provided a basis for community and
family services and moved away from placement of loved ones in an
institution. The Act 378 Task Force, predominantly made up of family
members and persons with disabilities, is charged with the oversight
of the implementation of the Act's provisions.
Family-Centered Approach
Ms. Haynes, a specialist who works with families of
the hearing impaired, spoke of how important it is to always keep
the child first and to support families as they support the children.
She emphasized the importance of seeing the person first and then
the disability. She also reminded everyone of the need for providers
of services to meet families where they are and to respect their
cultures and values. Although families and individuals need and
want supports, they appreciate it when those supports are no more
intrusive than necessary. Ms. Haynes reminded the panels:
When I work with families and parents, it's always
the child first and whatever the hearing is, later. But when you
talk about the culture, deaf people do have their own language,
perhaps their own rules of behavior and traditions, art forms,
heroes, and stories. And the community is different. Normally,
you would think of a community as a group that are all living
together. But because deaf people are in all different areas of
Louisiana and all over the country, where do the communities really
gather? Lots of times it's in their schools, if there is a large
enough group. Where do they meet their role models who are deaf
adults? Only one out of ten deaf children have deaf parents. So,
lots of times the parents may know no deaf adults.
Respite services are not always provided to many families,
and that impedes them in caring for the needs of their children
and does not allow them the flexibility to advocate and to locate
available resources. Those not on the DD home-and-community-based
services waiver experience great difficulty accessing respite. Mr.
Boykin, the father of a child with disabilities, mentioned that
he had a large family, and so the adult siblings were able to assist
and give them for mom and dad a break. This arrangement has both
advantages and disadvantages over a stranger providing the service.
According to Mr. Boykin,
...the wife and I will cry on each other's shoulders
a lot of times. And we turn around and leave, but we feel, like,
are they really taking care of him? And of course, they're family
members, but are they really doing what they should do? So, can
you imagine with a stranger coming in your house, and trying to
do something that you're not sure of, is he taking care of him
like he should, or, whatever. Family members try the best they
can, but they can't do it exactly like we do. And, we've done
it so long that it's become second nature to us.
Families of children with special needs are often
torn apart because of the high stress levels and lack of emotional
assistance provided in coping with the challenges of a child with
a chronic health condition, as well as the enormous financial pressures.
Lacking healthy coping mechanisms, husbands and wives can tear at
each other and, without emotional assistance and support, may find
it difficult to support each other and maintain the marriage or
the family unit. Single parents face tremendous challenges because
of a lack of support. A child's chronic health condition affects
the entire family. The family must be supported to enable it to
do what must be done for the child.
Case Management
Although case management services are intended to
help address these concerns, in Louisiana, Medicaid limits case
management to persons who are already on the DD home-and-community-based
services waiver, at-risk infants and toddlers, persons with HIV,
at-risk pregnant mothers, and the elderly. People receiving this
service are not impressed with its quality, as it requires them
to sit at home and wait for one more person to show up. The families'
knowledge of resources and their commitment to the well-being of
their children is often greater than the providers'. Many times
families have done the work while waiting for the case manager to
get to them. Some people did report that case managers were helpful
in intervening with providers and mediating difficulties. Currently,
Medicaid is attempting to limit case management to two providers
in each of the nine regions throughout the state to serve all five
eligible populations. This reduction will stress an already inadequate
system.
Self-Advocacy and Support
Addressing the issue of advocacy and support for students
with disabilities, particularly at the high school or collegiate
level, Mr. Senigaur focused on the types of available support services
beyond a counselor to resolve the questions and concerns that persons
with disabilities may have. He proposed the idea of a council in
schools where individuals with disabilities could discuss various
issues or concerns that they had, share knowledge, and problem solve.
I have found, if you have the support system of
peers, you can resolve your problems in an appropriate manner,
and it also gives you the confidence that you actually can accomplish
and overcome these various barriers.
Foster parents rely on support from other foster parents.
Parents rely on the support of other family members. Some people
mentioned the nuclear family as the only support they had, and in
families with only very young siblings, that is not much adult assistance.
Young people depend upon each other for support. All these supports
are natural and effective; however, they are limited in scope because
of limited funding.
It is essential to the total health of families of
children with special health care needs and of individuals with
disabilities that all planning be family centered, culturally sensitive,
coordinated across all systems of care, and community based. Family
and consumer input should be actively sought and respected. Since
families practice cost-effectiveness on a daily basis, they often
have good insight on how to manage resources wisely. Families and
individuals are the largest stakeholders in the process; they have
the right to self-determination and the practical need to drive
the services that support them.
COMMUNITY PARTICIPATION
People with disabilities in rural areas face barriers
to full community participation because of limited availability
of resources and transportation, limited accessibility to some businesses,
and limited recreational programs and equipment. They may be restricted
in their choices of housing by factors such as transportation, their
disability, community prejudice and ignorance, and economic difficulties.
Yet, some benefits were given of living in a small town. Ms. Higginbotham
testified:
There are positive things that we have encountered
in our town, such as living right around the corner from school,
and many people knowing one another, which makes us closer knit
than those in large cities. Having family nearby, and that some
local merchants have helped with some...special needs. Alison
is well-known and is greeted by many when we are out in our community.
A trip across town can only take a few minutes instead of the
long time it can take in a city such as New Orleans.
I cannot end without saying some of the positive
things that we have encountered with raising a child with disabilities.
Raising a child with disabilities can be challenging; however,
it can be rewarding, as it has been for me. Alison is so very
special and dear to me, and I cannot imagine life without her.
Her spirit and her love have given me strength that I never knew
existed within me, and she has taught me to have courage. She
has my undying love, and I am proud to be her mother.
Mr. Johnson shared how he has been able to learn braille
and cane travel to improve his participation in the community and
to foster independence. He has a seeing eye dog he can use in good
weather. However, because he was 21 when he lost his sight, the
young man found Braille difficult to learn and to use. He does have
a talking computer, which is good but has some flaws, just as all
technology does. For instance, the scanners are slow, and he requires
extra time to do his projects; therefore, he would benefit from
being given project assignments early as opposed to being given
extensions. There are other problems that also must be considered
for the visually impaired to enjoy full community participation,
as Mr. Johnson pointed out:
Another major problem we need to think about [with]
the technology as far as security reasons...there's no way I can
access a bank teller machine without some assistance. They now
have a thing that if you use a teller they charge you $2. So,
it's almost like I'm forced, in a way, to pay a fee to use my
own bank.
With the implementation of ADA, persons once referred
to as "the handicapped" are now referred to as "persons with disabilities."
Changes of attitudes toward individuals with disabilities has contributed
to legislative, social, and cultural progress. The Rehabilitation
Act, the Fair Housing Act, IDEA, and ADA have promoted more interaction
between persons with disabilities with the general public. With
increasing public awareness of civil rights laws and available programs
for individuals with disabilities, there is greater public acceptance
of those with disabilities. However, legislative improvements and
the industrialization of society, architectural and attitudinal
barriers that are complicated and multifaceted persist. Mr. Senigaur
related the following information:
A Lou Harris poll was conducted one and a half
years after the passage of ADA and...found that there were a disproportionate
amount of negative attitudes toward persons with disabilities.
Seventy-four percent felt pity, 47 percent reacted with fear,
16 percent felt anger because people with disabilities inconvenienced
them, and 9 percent felt resentment due to...special privileges.
However, all individuals polled admired persons with severe disabilities.
This general attitude of society raised the question of whether
the rehab professionals who were involved with persons with disabilities
were also affected by these negative attitudes and biases. And
the legislature found out that they were not immune to these negative
attitudes, because that's just the normal phenomenon with individuals
in society. As far as a resolution to this problem, I would implement
classes that would address these issues.
The training of people who work with those with disabilities
needs to be examined to promote full community participation. Some
people have personal biases for and prejudices against certain disabilities
and certain cultures. Providers need to be held accountable for
putting forth their best efforts to help all individuals with disabilities
because rehabilitation should promote the restoration of a person
to his or her fullest potential. If a provider does not have the
proper training or education or know the most respectful way to
work with people, it will continue to be difficult for people with
disabilities to properly assume their rightful role in society.
CONCLUSION
The information presented to NCD was candid and thought-provoking.
It was evident that the witnesses were courageous, determined, and
committed to the cause of improving the lives of persons with disabilities
in Louisiana. Even in the face of adversity and multiple barriers,
all the families, individuals with disabilities, and advocates were
very positive and vested in working with the situations they found
themselves in and advocating for the greater good of others. They
were self-advocates who had devoted time, money, and energy to learn
the rights and responsibilities of persons with disabilities and
to share their research with others. The state senator was open
to hearing from people with disabilities and their families and
to being educated on the issues and the concerns. She gave tips
on how to approach her and how to work with the legislature to effect
reform. Members of NCD expressed their appreciation to those who
testified and the diverse interests that had been well represented.
Mr. Leaf was the last person to testify at the hearing.
His testimony was a fitting conclusion to the day:
My message for the Council is just a brief reminder.
A reminder that people with disabilities these days have great
needs, but they also have great opportunities. As Charles Dickens
said, "It was the worst of times; it was the best of times." We
live in an age when the needs of people with disabilities and
their expectations have never been so greatÄprobably in part because
of the complexity of our society and the difficulty in keeping
up with that societyÄand when government and charitable resources
have never been so limited. But we also live in an age of technologyÄtechnology
that can level the playing field for people with disabilities,
enabling them to live full, independent, productive lives, and
be an integral part of the communities in which they live. In
effect, giving them the capacity to be on an equal, functioning
basis with their fellow citizens.
APPENDICES
PARTICIPANT LIST
Agnes Anderson
Jane Baker, Families Helping Families parent trainer
Richard Boykin, parent
Jerome Brown
Chanise Dennis, graduate student
Rosalynne B. Dennis, Ph.D.
Karen Divinity, parent
Juliette Haynes, Parent/Pupil Program, Louisiana School
for the Deaf
Karen Higginbotham, parent
The Honorable Senator Paulette Irons, Louisiana Senate
Michael Johnson, student
Shannon Robshaw, Mental Health Association in Louisiana
Debra Scott
Rodney Senigaur, college student
Mary Shanks, Advocacy Center for the Elderly and Disabled
Karen Trudeaux
Carol Wilson, Family Voices
REFERENCES
Department of Health and Hospitals and Louisiana Medicaid
Report; 1997.
Louisiana Governor Mike Foster's State of the State
Report; 1997.
United States Department of Education Report; 1997.
United States Department of Education, Office of Civil
Rights Report; 1997.
United States Department of Justice Report; 1997.
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