V. MENTAL RETARDATION/DEVELOPMENTAL DISABILITIES SERVICE DELIVERY SYSTEM
An array of services and supports are designed to assist people and their
families with mental retardation and developmental disabilities in Travis
County. These specialized services are offered through public and private
providers and include segregated and integrated opportunities. Overall, service
providers seek to address the individual requests of people with MR/DD. Providers
may focus on specific needs such as:
- employment
- daily activities
- specialized support and assistance
- family support and respite
- early childhood intervention
Other service providers are larger and more comprehensive in approach that
target people with specific disabilities such as autism, mental illness,
cerebral palsy, and/or the priority population as defined through the Texas
Department of Mental Health Mental Retardation (TDMHMR).
TDMHMR's priority population
for mental retardation service consists of individuals who meet one or more
of the following descriptions:
- Persons with mental retardation as defined by the Texas Health and Safety
Code Section 591.003.
- Persons with pervasive development disorders, as defined in the current
edition of the Diagnostic and Statistical Manual (DSM), including autism.
- Persons with related conditions who are eligible for services in Medicaid
programs operated by the department, including the Intermediate Care Facilities
for the Mentally Retarded (ICF/MR), Home and Community-Based Service (HCS),
Home and Community-Based Service - Obra (HCS-O) and Mental Retardation
Local Authority (MRLA) programs.
- Nursing facility residents who are eligible for specialized services
for mental retardation or a related condition pursuant to Section 1919(e)(7)
of the Social Security Act.
- Children who are eligible for services funded by Early Childhood Intervention
Interagency Council.
Over the last 10 years there has been an increased emphasis on the need
for local service providers to collaborate and coordinate their efforts.
Long waiting lists and limited resources have prompted the development of
local partnerships in order to maximize funding, meet the demand for services,
and advocate more effectively. The Mental Retardation/Developmental Disabilities
Planning Partnership (MR/DDPP) is a team of stakeholder representatives meeting
regularly to plan, assess, and share collective knowledge to promote healthy
and meaningful lives for people with mental retardation/developmental disabilities.
The MR/DDPP has documented local services for people with developmental disabilities
into an inventory map (Table 5) of local providers and the services they
provide. The development of the inventory map has assisted in identifying
gaps in local services. The Developmental Disability Inventory Map represents
many disability related services in Travis County.
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Table 5.
Travis County Developmental Disability Inventory Map 1
Table 5 Continued.
Travis County Developmental Disability Inventory Map
Table 5 Continued.
Travis County Developmental Disability Inventory Map
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INDIVIDUALIZED PLANNING AND ASSISTANCE
Information; screening and referral; eligibility and enrollment; and service
coordination (case management) are individualized services required throughout
the MHMR state and community MHMR systems. Service coordination is an essential
function within the state and local system as the assigned single accountable
staff person who has the task of helping the consumer to discern needs/requests
and resources/services and is required for comprehensive rehabilitation program
certification. Before services may be arranged, individual planning must
occur. Person-directed planning, also called personal futures planning, assesses
the strengths and capacities of the person and is a best practice model that
replaces the traditional approach of focusing on problems and weaknesses.
Using this approach, the personal goals and desires of people with mental
retardation and developmental disabilities are identified and used to select
and drive individual services. The principles of self-determination are another
example of best practice service utilized throughout the nation that focuses
on freedom and choice. Person-directed planning is a planning method that
connects people to their communities and develops relationships. With the
utilization of person directed planning the need for additional individual
support services will be necessary (ATCMHMR, 1996).
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EARLY CHILDHOOD INTERVENTION SERVICES
Early Childhood Intervention (ECI) programs are designed to serve families
who have children, from birth until the age of three, who are experiencing
some type of delay(s) in their growth and development. In keeping with federal
guidelines (Part C of IDEA- Individuals with Disabilities Education Act,
passed by Congress in 1975), parents and/or guardians of the child are engaged
as active team members in deciding what is needed to best support the child
and family. Parents and families take lead roles in planning goals and making
decisions about the therapies and activities that will affect their child's
life. Family-centered planning, like person-directed planning, looks to the
preferences and needs of each child and their family (Infant Parent Program,
personal communication, May 2001).
A variety of ECI services are available and may include physical, occupational,
respite, speech therapy, social work, service coordination, and early intervention
teaching in home, day care, and other community settings depending on the
needs and activities of the families. People with developmental disabilities,
who begin life with early childhood and family supports, are more likely
to have higher expectations of themselves, as will their family members.
ECI services are able to impact individual conditions and family issues before
needs become more complex. Infants in need but unable to access early intervention
services may experience greater developmental delays. Early intervention
must begin by the time children with disabilities are 2-3 years of age to
capitalize on the developing brain's capacity to be sculpted (Infant Parent
Program, personal communication, May 2001).
Each year, a number of children with disabilities receive ECI services from
one of three providers in the Austin area (Chart 7). The Easter Seals-Central
Texas served over 500 children and their families in FY 2000, the Austin
Travis County MHMR Infant Parent Program averages 425 children each year,
and Any Baby Can served 246 in FY 2000 (MR/DD Planning Partnership).
Transitional supports are available for families and their children who
are exiting ECI services. Families are educated about the availability of
choices in their community, including opportunities in public schools. It
is important to note that if a child meets a school district's eligibility
criteria, the district is required to provide services, but not necessarily
in a school setting. Family support services, including respite and caregiver
services continue to be a critical need.
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FAMILY/CARE GIVER SUPPORT AND RESPITE
Family and caregiver training and support, also a core service requirement,
is provided for primary care givers when the person with mental retardation
and developmental disabilities lives in his or her family home.
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In 1995, the demand for
respite services in Texas exceeded services by 1425 percent.
CAN, 1995
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Another related and core service is respite care, which may be any service,
or program that provides care for a person with a disability while the caregiver
is engaged in some other activity. Respite services may be community or facility-based
depending on the needs of the person and the family/caregiver. Services may
range from basic but specialized caregiving to therapeutically managed day
camps with licensed professionals.
Down syndrome is a major biologically-based cause of mental retardation
affecting approximately one out of 800 infants born each year in the United
State. In a study involving stress in the parenting of children with Down
syndrome, parents from similar social and economic situations perceived more
caregiving difficulties and child-related stress (distractibility, demandingness,
unacceptability), and parent-related stress (incompetence, depression, health
problems, role-restriction) than parents of typically developing children
(Roach, Orsmond, & Barrat, 1999). Parents of young children with Down
syndrome, like parents of children with other disabilities, face challenges
that may profoundly affect their family's ability to cope and the amount
of long-term support their children will ultimately need from their communities
(S. Miller, personal communication, May 2001).
The Family Support Cooperative (Coop) is a collaboration of Austin Independent
School District, Austin Travis County Mental Health Mental Retardation Center,
and The Arc of the Capital Area. The Coop provides support groups, educational
seminars, and training to families who care for children with a disability
or chronic illness. Meetings are held every Wednesday night during the school
year from 6:30 p.m. to 8:30 p.m. at the Rosedale School (S. Eason, personal
communication, June 2001).
In 1995, the demand for respite services in Texas exceeded services by 1,425
percent (CAN 1995). In 1997, The Arc of the Capital Area's Kristen's Fund,
sponsored by The Arc's Pilot Parent Program, was able to fund only two thirds
of the Austin families who qualified. In 1999, the Pilot Parent Program served
3,500 families in services that matched families with similar needs, provided
information and referrals for resources, hosted parent meetings and workshops,
provided special education assistance and offered other parent support activities
(The Arc of the Capital Area, personal communication, March 2000).
The Community Resources and Information for Special People (CRISP), a parent
organization locally serves thirty to fifty new parents a year. Begun as
a grassroots effort, CRISP now hosts monthly parent meetings and provides
speakers on topics such as Social Security, Medicaid, genetics, legal issues,
and guardianship (CRISP, personal communication, March 2000).
Easter Seals-Central Texas offers
therapeutically managed day "camps" for 30 children each summer
as a respite option. The social and recreational curriculum has been developed
by a licensed occupational therapist who also trains volunteers to work one-on-one
with each child. In 2001, Any Baby Can, a local bank, and private donors
provided scholarship support to camp enrollees with household incomes under
200 percent of poverty (S. Miller, personal communication, May 2001).
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GUARDIANSHIP
In some situations, parents and caregivers may need to seek guardianship
of their family member. Many people with developmental disabilities
do not require a guardian to make decisions on their behalf. However,
guardianship is a legal process designed to protect vulnerable persons
from abuse, neglect (including self-neglect), and exploitation.
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Currently the Travis County Guardianship
program at Family Eldercare serves 77 persons with developmental
disabilities. This represents approximately 44 percent of the
agency's active Travis County guardianships.
Family Eldercare
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State law does require each county in Texas to locate a guardian for any
incapacitated person who comes to the court's attention. Affecting the
demand for guardianship in Travis County is (Texas Guardianship Association,
2000):
- increasing population
- increased life expectancy of persons with developmental disabilities
- increasing awareness of care providers of the obligation to provide
informed consent to a person before providing services
Currently the Travis County Guardianship program at Family Eldercare serves
77 persons with developmental disabilities. This represents approximately
44 percent of the agency's active Travis County guardianships. Family Eldercare
also has a waiting list of 30 people, 21 who have been identified to have
developmental disabilities. Additionally, the Austin State School has identified
140 residents who are in need of a legal guardian. The process of applying
for the guardianship can be costly and time consuming for many families
(J. Haight, personal communication, June 2001).
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CHILD CARE
Autism Technical Support Services provides training for staff and children
at child care centers to increase information and comfort levels in caring
for and interacting with children with autism through their Inclusive Child
Care Task Force. Their November 1999 conference had over 100 child-care
providers in attendance. They are currently discussing an expansion in
this training to encompass children with other disabilities due to the
need for further training of childcare providers (Autism Technical Support
Services, personal communication, April 2000).
SUPPORTED LIVING SERVICES
Supported living services individually assist people with mental retardation
and developmental disabilities in their home and community environment.
A variety of supported living services exist in Travis County. Requests
far exceed available resources for support staff, services, and the supply
of affordable and accessible housing. Some of the services and programs
described below are also provided through private for-profit agencies not
included in this summary.
ATCMHMR operates a variety of programs. For persons with mental retardation,
options include group living residences, supervised apartment living, and
family living support. For persons with AIDS, HOPWA (Housing Opportunities
for Persons With AIDS) exists. Chemically dependent adults may find assistance
in the Oak Springs facility, and people who are homeless can turn to Safe
Haven. For persons experiencing mental illness, a Housing Coordinating
Team exists to help find housing resources such as The Inn. ATCMHMR also
offers the In-Home Support Services program to support clientele living
in the community.
Bill Paying services are an important service to keep living situations
intact. Without budgeting and bill paying assistance clients often lose
housing, don't receive needed services due to payment problems, or are
at risk for being exploited. Family Eldercare is the only provider of bill
paying and representative payee services to persons with MR who are low
income. No fee is charged. This service is an alternative to guardianship
or more restrictive placements. Almost 50 percent of consumers are referred
from ATCMHMR.
AIDS Services of Austin operates
several group or congregate facilities for their clientele as well as supporting
persons with HIV/AIDS in their personal homes or apartments.
A variety of boarding homes may also be an option for persons with disabilities
to live in the community, but these boarding homes are not licensed nor
are they regulated, so any assistance available for daily living supports
will vary from home to home and possibly from day to day.
Other supported living services vary in terms of the population served
and the level of support provided. These include the Marbridge
Foundation for persons with mental retardation, and the Texas
Commission for the Blind for persons who have visual impairments. For
persons with hearing impairments, resources include the Texas
School for the Deaf, Travis
County Services for the Deaf, and Vaughn House.
For persons with mental retardation and other developmental disabilities,
a number of options exist including the Mary
Lee Foundation, the Independent
Living Services Program (ILS) with Texas
Rehabilitation Commission (TRC), In-Home/Family Support and the CLASS
Program with TDHS, Empowerment Options and Disability Assistance of Central
Texas.
Additional community living programs do exist. Although their primary
population does not, by definition, include persons with disabilities,
it is possible that someone with disabilities could utilize these services.
These programs include agencies such as LifeWorks
for Youth, ACCESS Homeless Services, the
Salvation Army, Blackland Transitional Housing, Housing
Authority of the City of Austin, Travis County Housing Authority, South
Travis County Emergency Services, and others.
A number of agencies also provide training to learn independent living
skills for a variety of populations. These include The
Arc of the Capital Area, ARCIL,
TRC-ILS, LifeWorks, NOW Services, Travis
County Services for the Deaf, and Disability
Assistance of Central Texas (DACT).
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CRIMINAL JUSTICE
In the spring of 1995, the Texas Department of Criminal Justice
(TDCJ) became the largest prison system in the world with 117,000
men and women incarcerated. The total does not include people on
parole, probation, in state jails, boot camps or private prisons.
In 1995, the number was projected to increase to 156,000 inmates
by 1996, with a minimum representation of 15,600 people with mental
retardation incarcerated. As a result, the cost to taxpayers would
be a minimum of $468,000,000 as opposed to $140,400,000 (Chart
8) if appropriate diversion and community supports had been utilized
(Arcil, Inc., 1996).
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Crime against victims with developmental disabilities often goes undiscovered.
Suspects with mental retardation, whose condition is not discerned, may
experience a perpetual and never ending cycle in and out of the criminal
justice system. Unknowingly, the justice system fails to provide people
with mental retardation with the due process afforded general society.
SafePlace provides a comprehensive array of sexual assault and domestic
violence counseling and prevention education services for persons with
mental retardation, developmental and other disabilities. Counseling services
are available for Travis county residents who have experienced sexual,
domestic, or caregiver abuse. Counseling is designed to promote healing,
explore safe options, and provide education to reduce the risk of future
abuse. SafePlace also provides children, youth, and adults with disabilities
with education focused on preventing violence, assessing potential risks
of abuse, safety planning, reporting abuse, and acting as powerful self-advocates
(W. Abramson, personal communication, June 2001).
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LONG TERM CARE
People with mental retardation and developmental disabilities may need
life long services, supports, and care. Defined in statute, long term care
means "the provision of health care, personal care, and assistance
related to health and social services over a sustained period to people
of all ages and their families regardless of the setting in which the care
is given."
The FY 2002-2003 draft of the Long Term Care Plan for People with Mental
Retardation and Related Conditions by the Texas Health and Human Service
Commission (THHSC, 2001) discusses and identifies several goals and initiatives,
including cost status and funding strategies. It emphasizes the significance
of waiting lists as critical planning tools for the TDMHMR system. A major
initiative of the Citizens' Planning and Advisory Committee (CPAC) is to
evaluate what happens to a person while he or she is waiting for services.
Certified outpatient clinic facilities have been established as single
sites with the capacity to develop and deliver integrated Plans of Care
for children and adults with disabilities that are person/family centered
and strength based. These long-term care programs provide services that
include, but may not be limited to:
- Therapeutic, medically prescribed intervention (physical, occupational,
speech and language therapies and social work)
- Pyscho-social counseling
- Family intervention and support
- Resource management
- Interagency coordination and service integration
- Transition planning and assistance
- Therapeutic day activities and respite that enhances family and individual
functioning, community integration and respite support
- Equipment and assistive technology needs assessment and linkage
When planning for long-term care, trends in mental retardation and developmental
disability services must be considered. The Texas Health and Human Service
Commission describes three significant movements that are affecting quality
of life and the way long-term care is applied. These include (THHSC, 2001):
- The evolution of self-determined service systems throughout the United
States is expanding. New practices are being introduced that ensure services
and supports are individually tailored and controlled by the person with
developmental disabilities and their family. Core practices are emerging
which promote individual budgeting, personal brokerage and case coordination
roles, power sharing and system governance and consumer education and
training.
- A reduction in larger Medicaid-funded congregate care facilities is
occurring. In six of the ten largest states, the number of consumers
transitioned to small community-based residential settings has been greater
than 50 percent.
- Initiatives to reduce waiting lists using state funding are being
driven in part by pending litigation seeking federal court intervention
to require the states to offer Medicaid funded Intermediate Care Facilities
for the Mentally Retarded (ICF/MR) or Home and Community Based waiver
services to all eligible individuals with developmental disabilities
on waiting lists.
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TECHNOLOGY
For people with mental retardation and developmental disabilities, advances
in communications and other technological opportunities can be used to
increase their ability to relate to others and greatly improve individual
quality of life outcomes.
Assistive technology can support people at work and home to manipulate
the environment and perform tasks they might otherwise find difficult
or impossible and to increase their ability to relate to others.
Educational opportunities are expanding by the use of new technologies.
Safety devices and other systems help to make independent living
more within reach.
Technologies are helping to increase individual mobility and to
correct certain medical and physical conditions that were not easily
addressed in the past. Technology has already evolved to the level
that augmented communication and assistive technology systems are
making communication, environmental control, mobility, and access
integrated into one system.
High tech is particularly helpful for employees with visual disabilities
interested in computer-related work. Cara, who is blind and hard-of-hearing,
was hired at the Hyatt Hotel as a reservation specialist through
the Austin Supportive Employment Rehabilitation Technology (ASERT)
program. Texas Commission for the Blind worked closely with the
Hyatt to develop adaptive technology. Cara uses one headphone to
talk to the customer, and one headphone to listen to her talking
computer.
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Without technology - ranging
from high tech to extremely low tech - many people with disabilities
would not be working today. One woman in the ASERT program
at Disability Assistance was hired to be a reservations operator
for state parks at Texas Parks and Wildlife. Because of the
high volume of calls, speed was critical. This particular woman
has spastic cerebral palsy in all of her limbs and uses a wheelchair
to get around. Because her lower legs are less affected than
her arms, she uses her feet for many of her daily activities,
including typing. Unfortunately, her workspace could not be
altered, because it was needed for reservationists on other
shifts. The solution? A chair that elevated her high enough
above the keyboard so that she could type with her feet.
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A Braille readout at the bottom of her keyboard lets her know what she
has entered into her computer fields. She also uses a Braille note-taking
devise that she converts into Microsoft Word documents for her boss. Her
supervisor has commented that she makes more reservations working three
days a week than other employees do five days a week.
Other solutions involve more creativity than expense. Pizza Hut hired
two young men -brothers - through the ASERT program. Their job was to fold
pizza boxes, but they lacked the fine motor coordination to do the job
without assistance. An anchored frame to help fold the boxes was developed
through the efforts of ASERT staff, Texas Commission for the Blind, and
Pizza Hut. The two brothers who pioneered the adaptive aid are doing well
at their jobs, and the frame is destined for implementation in pizza restaurants
across the nation.
The Texas Rehabilitation Commission (TRC) and Disability Assistance of
Central Texas (DACT) operate technology libraries in Travis County. The
TRC library has a variety of adapted equipment that people with disabilities
may see and "try out" on site. DACT operates the Liberation Station,
a technology and toy lending library. As in the usual concept of a "Library," clients
may borrow equipment for a limited amount of time, usually two weeks, to
see if the equipment is an item that would be useful for them to purchase.
Inventory includes computers, software, toys and games, enabling the library
to serve as a resource for clients of all ages.
Liberation Station has expanded its services to include a computer lab
in which computers are programmed with a variety of adaptive software.
Clients may receive software training tailored to their specific need and
disability. Programs such as Capital Idea and Empowerment Options also
offer computer training.
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MENTAL RETARDATION LOCAL AUTHORITY (MRLA)
In 1998, Austin Travis County MHMR Center's Mental Retardation Services
began to transition from an independent service provider into a Mental
Retardation Local Authority (MRLA) and managed care system. As a result,
people who qualify for services under priority population guidelines became
able to choose and access other local providers, including internal provider
services, using Medicaid waiver dollars. Under this new arrangement, a
voucher program for purchasing employment and day activity services was
also implemented using General Revenue funds as an additional way to offer
flexibility and choice in service providers. However, many people with
developmental conditions do not meet the criteria to participate in the
MRLA system. For more information regarding Travis County's Local Authority,
see Appendix B.
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Assessment Home
1. The Inventory Map is not intended to
be inclusive of all supports available to community members and does
not include providers who did not offer input. It should be noted that
respite services are included under family support and the advocacy heading
includes personal safety awareness services. It is further divided into
two broad categories representing community based and state agency services.
As table 5 reflects, a number of services are available in the community,
various eligibility criteria and funding mandates limit access and availability
of services to all in need. For example, there is a number of Medicaid
waiver services managed through various state agencies (deaf/blind, CBA,
CLASS and MRLA). Each has different eligibility criteria and extensive
referral lists that represents unmet service needs. To inquire about
specific services, contact United Way Capital Area's First Call for Help
at (512) 324-1899.
