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DISABILITY LAW CENTER OF ALASKA
Annual Program Performance
Goals, Priorities and Objectives
2005 Federal Fiscal Year
Overview
The Disability Law Center of Alaska is the designated “Protection
and Advocacy” (P & A) agency for Alaska. In response to the public
outcry about the abuse and neglect of individuals with disabilities
in institutional care, the U.S. Congress in 1975 mandated the
creation of P & A agencies in every state and territory. The purpose
of this nationwide system is to provide for the protection of and
advocacy for the legal, civil, and human rights of persons with
mental or physical disabilities.
When the Protection and Advocacy
Systems were first initiated, programs established themselves by
responding to every customer's need. In doing so the system
gained a positive reputation among consumers and was successful
in petitioning Congress to expand its mandate to include not
only people with developmental disabilities but also people with
labels of mental illness and other disabilities. The three
primary federal programs of the Disability Law Center are:
Protection & Advocacy System for Persons with Developmental
Disabilities (PADD) was created by the Developmental Disabilities
Assistance and Bill of Rights Act of 1975. P&As are required by the
Act to pursue legal, administrative, and other appropriate remedies to
protect and advocate for the rights of individuals with developmental
disabilities (DD) under federal and state laws. The Administration for
Children and Families, Administration on Developmental Disabilities
administers the PADD program.
The Protection & Advocacy Program for Individuals with Mental Illness
(PAIMI) was established in 1986. PAIMI agencies are mandated to (1)
protect and advocate for the rights of people with mental illness and
(2) investigate reports of abuse and neglect both in facilities that
care for or treat individuals with mental illness and in the
community. The Substance Abuse and Mental Health Services
Administration, Center for Mental Health Services administers the
PAIMI program.
The Protection and Advocacy Program for Individual Rights (PAIR) was
established by Congress as a national program under the Rehabilitation
Act in 1993. PAIR programs were established to protect and advocate
for the legal and human rights of persons with disabilities not served
by either the PADD or PAIMI programs. The Office of Special Education
and Rehabilitative Services, Rehabilitation Services Administration
administers the PAIR program.
However, we have reached a point where demand for our services exceeds
available resources and we must plan activities in a strategic manner to
most effectively utilize those resources. Our funding sources
understand our dilemma and support our efforts toward efficiency and in
determining whom we serve and then how we serve those clients. One such
effort is the process of establishing Goals, Priorities and Objectives,
a process which incorporates a variety of factors, including our federal
mandates, public input, and our twenty-five years of expertise in
providing legally-based advocacy for people with disabilities in
Alaska. The 2005 Goals, Priorities and Objectives, approved by our
Board of Directors, are described below.
DLC is committed to promoting and preserving disability rights in the
State of Alaska. Please call us to see how we can assist you.
Case Selection
The Disability Law Center of Alaska serves individuals whose
disability is the reason for discrimination, abuse or neglect, or
failure to provide needed services. We do NOT handle general legal
problems for people with disabilities, such as probate of an estate,
obtaining a divorce or filing for bankruptcy. If you have a
disability and cannot afford legal help, we may be able to refer you
to an appropriate agency to assist with non-disability related
problems.
The Disability Law Center considers the following factors during
the case selection process:
- must be eligible (an individual with a disability) and the problem area must be central to the disability;
- to which the problem area has an immediate and/or significant impact on the persons life,
health, or safety;
- to which the client has
the capacity to advocate for themselves;
- has resources to provide
adequate representation (financial, personnel, expertise);
- a possibility of
successful resolution;
- of other appropriate referrals (private attorney, Alaska Legal Services
Corporation);
- to which the client lives
in an area where no other services are available (rural, remote).
The level of services provided is
based on the unique facts and circumstances of every client’s
situation.
Areas of Emphasis
The Goals, Priorities and Objectives describe activities that
will occur in one or more Areas of Emphasis, previously known as
Life Domains. The term ''Areas of Emphasis'' means the areas related
to services available or offered to individuals in a community,
including formal and informal community supports, that affect their
quality of life. A description of the nine Areas of Emphasis
follows:
Quality Assurance -
Advocacy, capacity building, and systemic change activities that
result in improved consumer and family-centered quality assurance
and that result in systems of quality assurance and consumer
protection that-
(A) include monitoring of services, supports, and assistance provided to an individual with developmental disabilities that ensures that the individual-
(i) will not experience abuse, neglect, sexual or financial exploitation, or violation of legal or human rights; and
(ii) will not be subject to the inappropriate use of restraints or seclusion;
(B) include training in leadership,
self-advocacy, and self-determination for individuals with
developmental disabilities, their families, and their guardians to
ensure that those individuals-
(i) will not experience abuse, neglect, sexual or financial exploitation, or violation of
legal or human rights; and
(ii) will not be subject to the inappropriate use of restraints or
seclusion; or
(C) include activities related to
interagency coordination and systems integration that result in
improved and enhanced services, supports, and other assistance that
contribute to and protect the self-determination, independence,
productivity, and integration and inclusion in all facets of
community life, of individuals with developmental disabilities.
Education - Advocacy,
capacity building, and systemic change activities that result in
individuals with developmental disabilities being able to access
appropriate supports and modifications when necessary, to maximize
their educational potential, to benefit from lifelong educational
activities, and to be integrated and included in all facets of
student life.
Early Intervention -
Advocacy, capacity building, and systemic change activities provided
to individuals described in paragraph (8)(B) and their families to
enhance-
-
(A) the development of the
individuals to maximize their potential; and
-
(B) the capacity of families to meet the special needs of the
individuals
Child Care - Advocacy,
capacity building, and systemic change activities that result in
families of children with disabilities having access to and use of
child care services, including before-school, after-school, and
out-of-school services, in their communities.
Health - Advocacy, capacity
building, and systemic change activities that result in individuals
with developmental disabilities having access to and use of
coordinated health, dental, mental health, and other human and
social services, including prevention activities, in their
communities.
Employment - Advocacy,
capacity building, and systemic change activities that result in
individuals with developmental disabilities acquiring, retaining, or
advancing in paid employment, including supported employment or
self-employment, in integrated settings in a community.
Housing - Advocacy, capacity
building, and systemic change activities that result in individuals
with developmental disabilities having access to and use of housing
and housing supports and services in their communities, including
assistance related to renting, owning, or modifying an apartment or
home.
Transportation - Advocacy,
capacity building, and systemic change activities that result in
individuals with developmental disabilities having access to and use
of transportation.
Recreation - advocacy,
capacity building, and systemic change activities that result in
individuals with developmental disabilities having access to and use
of recreational, leisure, and social activities, in their
communities.
Based on input from a variety of sources, including public
comment, the Goals, Priorities and Objectives described herein
reflect the needs of Alaskans with disabilities in relation to these
Areas of emphasis.
Service Principles
-
disabilities
share with all citizens of the United States and its
territories, basic human, legal, and civil rights.
-
and priorities address the human, legal, and civil rights of those
individuals in the greatest jeopardy and with the greatest
needs.
-
role of
advocates is to establish, expand, protect and enforce the
human, legal and civil rights of people with disabilities.
-
of the advocate is
to inform the client about options, to assist the client to
express preferences, and to ensure these preferences are heard
and vigorously pursued within the scope of the law.
- are
sensitive and responsive to the unique needs of individuals
from diverse ethnic, racial, and cultural backgrounds.
- of advocacy
services is advertised to potential clients, the location of
services is physically accessible and the program possesses
the resources necessary to communicate effectively with its
clients.
- decision or
meaningful choice cannot be or is not expressed by a client,
or when consent is not available from or provided by a client
or legally authorized substitute, advocates safeguard and
advance the human, legal and civil rights of the person with a
disability in a way that does not limit the client's options
for choice.
- people with
disabilities to speak for themselves regarding their personal,
programmatic and service goals and desires.
PAIMI PROGRAM
PURPOSE, ELIGIBILITY AND GOALS
2005 Federal Fiscal Year
PAIMI Congressional Findings and
Statement of Purpose
(a) The Congress finds that—
(1) individuals with mental illness are vulnerable to abuse and serious injury;
(2) family members of individuals
with mental illness play a crucial role in being advocates for the
rights of individuals with mental illness where the individuals are
minors, the individuals are legally competent and choose to involve
the family members, and the individuals are legally incompetent and
the legal guardians, conservators, or other legal representatives
are members of the family;
(3) individuals with mental illness
are subject to neglect, including lack of treatment, adequate
nutrition, clothing, health care, and adequate discharge planning;
and
(4) State systems for monitoring
compliance with respect to the rights of individuals with mental
illness vary widely and are frequently inadequate.
(b) The purposes of this chapter are—
(1) to ensure that the rights of
individuals with mental illness are protected; and
(2) to assist States to establish
and operate a protection and advocacy system for individuals with
mental illness which will—
(A) protect and advocate the rights
of such individuals through activities to ensure the enforcement of
the Constitution and Federal and State statutes; and
(B) investigate incidents of abuse
and neglect of individuals with mental illness if the incidents are
reported to the system or if there is probable cause to believe that
the incidents occurred.
PAIMI Program Eligibility Criteria
The term "individual with mental illness" means an individual—
-- who has a significant mental illness or emotional impairment,
as determined by a mental health professional qualified under the
laws and regulations of the State; and
- an inpatient or
resident in a facility rendering care or treatment, even if
the whereabouts of such inpatient or resident are unknown;
- in the process of
being admitted to a facility rendering care or treatment,
including persons being transported to such a facility; or;
- involuntarily
confined in a municipal detention facility for reasons other
than serving a sentence resulting from conviction for a
criminal offense;
OR
-- who has a significant mental
illness or emotional impairment and lives in a community setting,
including their own home.
PAIMI Program Goals
GOAL A: The Disability Law Center of Alaska, through its PAIMI Program, Will Strive Toward
Eliminating Abuse, Neglect And Exploitation Of Individuals With
Mental Illness.
Area(s) of Emphasis: Quality
Assurance, Health
Priority 1:
Investigation/Prevention of Abuse and Neglect.
Whenever a report or complaint is received alleging danger to the
health and safety of a person with a disability it becomes the
agency’s number one priority. The Protection and Advocacy system was
originally established to investigate and prevent abuse and neglect
from occurring within institutions. However, due to changes in law
and public policy, more people with disabilities are moving from
institutions to live in the community. Therefore, the Disability Law
Center responds to complaints of abuse and neglect wherever it may
be occurring.
The
term "abuse" means any act or failure to act by an employee of a
facility rendering care or treatment which was performed, or which
was failed to be performed, knowingly, recklessly, or intentionally,
and which caused, or may have caused, injury or death to a
individual with mental illness. Forced medication is considered a
form of abuse.
The
term "neglect" means a negligent act or omission by any individual
responsible for providing services in a facility rendering care or
treatment which caused or may have caused injury or death to a
individual with mental illness or which placed a individual with
mental illness at risk of injury or death, and includes an act or
omission such as the failure to establish or carry out an
appropriate individual program plan or treatment plan for a
individual with mental illness, the failure to provide adequate
nutrition, clothing, or health care to a individual with mental
illness, or the failure to provide a safe environment for an
individual with mental illness, including the failure to maintain
adequate numbers of appropriately trained staff.
The
term "facilities" may include, but need not be limited to,
hospitals, nursing homes, community facilities for individuals with
mental illness, board and care homes, homeless shelters, and jails
and prisons.
Objectives:
- To ensure that all federal,
state, and local agencies charged with the responsibility of
investigating complaints of abuse and neglect of individuals
with mental illness conduct their investigations in a timely,
thorough and objective manner;
- reports of
abuse and neglect of individuals with mental illness when,
after appropriate notice, the responsible agency fails to
respond to the complaint in a timely manner;
- reports of
abuse and neglect of individuals with mental illness where
incidents continue to occur despite prior investigations by
the appropriate federal, state or local agency;
- regular contact
with patients of adult and child psychiatric facilities
through monthly visits and, where necessary, advocate for a
patient’s legal and civil rights; advocate on behalf of 10
individuals in residential settings;
- with other
investigative agencies to ensure that the system responds
quickly and reliably to complaints of abuse and neglect;
- quarterly to the
Alaska Mental Health Board about any inappropriate use of
restraint, seclusion, excessive force and other punitive
methods of controlling individuals with mental illness at
state and private facilities;
- with appropriate
agencies with the goal of achieving systemic changes in the
areas of discharge planning and involuntary commitments.
- 5 trainings
statewide on abuse and neglect prevention/detection and
general mental health rights.
Strategic/Resource Guidance:
Complaints of abuse and neglect alleging death or serious injury
will be prioritized.
Complaints originating in facilities with repeated complaints of
abuse and neglect will be prioritized.
If a complaint of abuse or neglect is being investigated by the state
Office of Children Services or the local/state police, DLC will delay
its own investigation pending the outcome of that investigation.
Trainings on mental health rights will include information on advance
directives.
GOAL B: The Disability Law
Center of Alaska, through its PAIMI Program, Will Outreach And
Advocacy Services To The Homeless Who Have A Mental Illness In
Communities Across The State.
Area(s) of Emphasis: Health,
Housing, Quality Assurance, Employment
Priority 1: Increase outreach
to the homeless
Reducing the proportion of homeless adults who have serious
mental illness (SMI) is one of the goals of Healthy People 2010, a
comprehensive, nationwide health promotion and disease prevention
agenda launched the Department of Health and Human Services in 2000.
The percentage of homeless with disabilities is higher in Alaska
(39%) than in the nation as a whole (25%). The most prevalent
disability among the homeless population is mental illness (23%).
The Disability Law Center will attempt to reduce the proportion of
homeless adults who have significant mental illness and severe
emotional disturbance.
In collaboration with other interested agencies, such as Catholic
Social Services (homeless shelter operator), the Veterans Administration
(veterans comprise 17% of the Alaska homeless population), and the
Alaska Native Justice Center (36% of the homeless are Alaska Natives),
DLC will provide outreach and services to homeless Alaskans. Advocacy
assistance to homeless individuals with mental illness will encompass
activities directed at obtaining and/or maintaining housing, securing
government benefits (SSI, Medicaid), and working with individuals
seeking employment accommodations.
Objectives:
- To conduct outreach/intake
at homeless facilities in Anchorage at least monthly with the
Alaska Native Justice Center and other agencies to assist
homeless individuals with mental illness, through referral or
direct legal assistance, in accessing appropriate supports and
services;
- To conduct monthly
outreach/intake visits at the Veterans Administration’s
Comprehensive Homeless Center;
- To provide direct legal
assistance to 10 individuals with mental illness who are
homeless.
Strategic/Resource Guidance:
Outreach activities may be suspended when caseloads involving
direct legal advocacy exceed manageable levels.
Priority 2. Advocate to
prevent homelessness
For people with mental illness, maintaining decent, safe,
affordable housing is often very difficult. Many people with mental
illness face discrimination in the search for housing, which is
exacerbated by the shortage of low-income housing. Additionally,
maintaining housing can be difficult in the absence of appropriate
accommodations. Even emergency housing can be substandard and
dangerous to the health and safety of individuals with mental
illness.
Objectives:
- To provide direct legal
assistance to 5 individuals with mental illness who are at
risk of eviction because of their disability;
- To increase the availability
of housing by reviewing and, if necessary, advocating for
changes to local zoning ordinances that discriminate against,
or have a disparate impact on, individuals with mental
illness.
Strategic Resource Guidance
If a complaint of Fair Housing violation is being, or should be,
investigated by another agency, such as the Office of Housing and
Urban Development or the Alaska Housing Finance Corporation, DLC may
delay its own investigation or make a referral to the appropriate
agency. DLC will, however, review all referred investigations to
ensure that the investigation is rigorous, thorough and objective.
Goal C: The Disability Law
Center of Alaska, through its PAIMI Program, Will Facilitate The
Community Integration Of Individuals With Mental Illness By
Protecting Their Rights To Receive Appropriate Supports And Services
In The Most Integrated Setting
Area(s) of Emphasis: Housing,
Quality Assurance, Employment
Priority 1. Advocate on
behalf of people with mental disabilities who face barriers to
community integration efforts.
Under state and federal laws, people with disabilities have the
right to live in integrated settings in their local communities with
the appropriate supports and services. However, many individuals
with mental illness who are in both large and small facilities
encounter barriers that make it difficult or prevent them from
living in an integrated setting. Examples of such barriers include
rules and policies that have a disparate impact on individuals with
mental illness, the absence of community-based services, and the
diversion of scarce resources away from community-based services.
Objectives:
- To advocate on behalf of 10
individuals with mental illness who have complaints of Fair
Housing Act and other housing rights violations;
- To monitor the effort by the
State of Alaska and mental health providers to return children
placed in out-of-state residential facilities;
- To monitor all applications
for Certificates of Need to prevent the diversion of scarce
resources from community-based programs and services;
- To advocate against any
changes to the Certificate of Need statutes that would
eliminate public comment on the necessity of facilities for
people with disabilities;
- To monitor state efforts to
develop and implement a comprehensive, effectively working
plan for ensuring community-based services for individuals
with disabilities in compliance with the Americans with
Disabilities Act and the U.S. Supreme Court’s decision in
Olmstead.
Strategic/Resource Guidance:
If a complaint of Fair Housing violation is being, or should be,
investigated by another agency, such as the Office of Housing and
Urban Development or the Alaska Housing Finance Corporation, DLC may
delay its own investigation or make a referral to the appropriate
agency. DLC will, however, review all referred investigations to
ensure that the investigation is rigorous, thorough and objective.
Priority 2. Advocate on
behalf of individuals with mental illness who face discrimination in
the community that jeopardizes their income, and therefore their
ability to remain in an integrated setting.
For any of us to remain in our homes in the community, we require
a steady source of income, be it from employment or government
benefits. For individuals with mental illness, obtaining and/or
maintaining employment is wrought with hurdles, from the application
process to subsequent job accommodations. Individuals who have
guardians or conservators or representative payees managing their
income often express concerns over the management of their money and
whether sufficient funds remain in their accounts to pay the bills.
Objectives:
- To advocate on behalf of 5
individuals with mental illness who face discrimination in the
hiring process, promotion process, termination where there was
a failure to provide reasonable accommodations;
- To advocate on behalf of, or
provide self-advocacy assistance to, 5 individuals with mental
illness with respect to their rights when their income is
managed by a conservator, guardian, or representative payee.
Strategic/Resource Guidance:
Assisting individuals with employment related matters may not, in
all instances, include court or administrative representation
(unless individuals qualifies for assistance under PABSS), but may
involve the provision of self-advocacy assistance and training.
If a complaint of employment discrimination is being, or should be,
investigated by another agency, such as the Anchorage Equal Rights
Commission, the Alaska State Commission on Human Rights, or the Equal
Employment Opportunity Commission, DLC may delay its own investigation
or make a referral to the appropriate agency. DLC will, however, review
all referred investigations to ensure that the investigation is
rigorous, thorough and objective.
GOAL D: The Disability Law
Center of Alaska, through its PAIMI Program, Will Ensure That
Individuals With Mental Illness Have Access To Government Benefits
Area(s) of Emphasis: Health, Housing
Priority 1: To increase
access to financial entitlements and appropriate medical benefits
for individuals with mental illness.
Access to basic individual and community supports through
government assistance programs is necessary for people with
disabilities before they can consider independent living, continued
education and employment. These supports include Social Security
programs, Alaska Public Assistance, in-home support services,
individualized support from state government and private providers,
Medicaid, Medicare, and managed care among others. For children with
disabilities, access to the expanded scope of benefits under the
federal Medicaid requirement of EPSDT (Early and Periodic Screening
Diagnosis and Treatment) means the difference between being able to
remain in the home and institutionalization.
The complicated rules governing the provision of benefits and the
bureaucracies that administer these public benefit programs are
confusing. This confusion frequently results in an unjust denial of
benefits. In addition, cutbacks in benefits at the state and federal
level, as well as the elimination of various consumer protections, will
erode the ability of people with disabilities to live independently.
Objectives:
- To assist 60 individuals
with mental illness to obtain and maintain SSI/SSDI and
related benefits, such as Medicaid and Adult Public
Assistance;
- To advocate in collaboration
with Alaska’s mental health community for the development of
Medicaid waivers for individuals with significant mental
illness and severe emotional disturbance by examining similar
waivers in other states in which the money follows the person.
- To conduct 4 trainings
statewide on social security benefits and the administrative
appeals process.
Strategic/Resource Guidance:
Assisting individuals with mental illness obtain social security
benefits does not encompass the initial application process.
Assisting individuals with mental illness maintain social security
benefits does not encompass the provision of direct legal assistance for
continuing disability reviews.
Assisting individuals with mental illness maintain social security
benefits does not encompass the provision of direct legal assistance for
overpayment issues unless the individual demonstrates significant
cognitive impairments.
PADD PROGRAM
PURPOSE, ELIGIBILITY AND GOALS
2005 Federal Fiscal Year
PADD Congressional Findings and
Statement of Purpose
Congress finds that-
(1) disability is a natural part of the human experience that
does not diminish the right of individuals with developmental
disabilities to live independently, to exert control and choice over
their own lives, and to fully participate in and contribute to their
communities through full integration and inclusion in the economic,
political, social, cultural, and educational mainstream of United
States society;
(2) in 1999, there were between 3,200,000 and 4,500,000
individuals with developmental disabilities in the United States,
and recent studies indicate that individuals with developmental
disabilities comprise between 1.2 and 1.65 percent of the United
States population;
(3) individuals whose disabilities occur during their
developmental period frequently have severe disabilities that are
likely to continue indefinitely;
(4) individuals with developmental disabilities often encounter
discrimination in the provision of critical services, such as
services in the areas of emphasis (as defined in section 102);
(5) individuals with developmental disabilities are at greater
risk than the general population of abuse, neglect,
financial and sexual exploitation, and the violation of their legal
and human rights;
(6) a substantial portion of individuals with developmental
disabilities and their families do not have access to appropriate
support and services, including access to assistive technology, from
generic and specialized service systems, and remain unserved or
underserved;
(7) individuals with developmental disabilities often require
lifelong community services, individualized supports, and other
forms of assistance, that are most effective when provided in a
coordinated manner;
(8) there is a need to ensure that services, supports, and other
assistance are provided in a culturally competent manner, that
ensures that individuals from racial and ethnic minority backgrounds
are fully included in all activities provided under this title;
(9) family members, friends, and members of the community can
play an important role in enhancing the lives of individuals with
developmental disabilities, especially when the family members,
friends, and community members are provided with the necessary
community services, individualized supports, and other forms of
assistance;
(10) current research indicates that 88 percent of individuals
with developmental disabilities live with their families or in their
own households;
(11) many service delivery systems and communities are not
prepared to meet the impending needs of the 479,862 adults with
developmental disabilities who are living at home with parents who
are 60 years old or older and who serve as the primary caregivers of
the adults;
(12) in almost every State, individuals with developmental
disabilities are waiting for appropriate services in their
communities, in the areas of emphasis;
(13) the public needs to be made more aware of the capabilities
and competencies of individuals with developmental disabilities,
particularly in cases in which the individuals are provided with
necessary services, supports, and other assistance;
(14) as increasing numbers of individuals with developmental
disabilities are living, learning, working, and participating in all
aspects of community life, there is an increasing need for a well
trained workforce that is able to provide the services, supports,
and other forms of direct assistance required to enable the
individuals to carry out those activities;
(15) there needs to be greater effort to recruit individuals from
minority backgrounds into professions serving individuals with
developmental disabilities and their families;
(16) the goals of the Nation properly include a goal of providing
individuals with developmental disabilities with the information,
skills, opportunities, and support to-
(A) make informed choices and decisions about their lives;
(B) live in homes and communities in which such individuals can
exercise their full rights and responsibilities as citizens;
(C) pursue meaningful and productive lives;
(D) contribute to their families, communities, and States, and
the Nation;
(E) have interdependent friendships and relationships with
other persons;
(F) live free of abuse, neglect, financial and sexual
exploitation, and violations of their legal and human rights; and
(G) achieve full integration and inclusion in society, in an
individualized manner, consistent with the unique strengths,
resources, priorities, concerns, abilities, and capabilities of
each individual; and
(17) as the Nation, States, and communities maintain and expand
community living options for individuals with developmental
disabilities, there is a need to evaluate the access to those
options by individuals with developmental disabilities and the
effects of those options on individuals with developmental
disabilities.
PURPOSE. - The purpose of this title is to assure that
individuals with developmental disabilities and their families
participate in the design of and have access to needed community
services, individualized supports, and other forms of assistance
that promote self-determination, independence, productivity, and
integration and inclusion in all facets of community life, through
culturally competent programs authorized under this title, including
specifically-
(1) State Councils on Developmental Disabilities in each State to
engage in advocacy, capacity building, and systemic change activities
that-
(A) are consistent with the purpose described in this subsection
and the policy described in subsection (c); and
(B) contribute to a coordinated, consumer- and family-centered,
consumer- and family-directed, comprehensive system that includes
needed community services, individualized supports, and other forms
of assistance that promote self-determination for individuals with
developmental disabilities and their families;
(2) protection and advocacy systems in each State to protect the
legal and human rights of individuals with developmental disabilities;
(3) University Centers for Excellence in Developmental Disabilities
Education, Research, and Service-
(A) to provide interdisciplinary pre-service preparation and
continuing education of students and fellows, which may include the
preparation and continuing education of leadership, direct service,
clinical, or other personnel to strengthen and increase the capacity
of States and communities to achieve the purpose of this title;
(B) to provide community services-
(i) that provide training and technical assistance for
individuals with developmental disabilities, their families,
professionals, paraprofessionals, policy-makers, students, and
other members of the community; and
(ii) that may provide services, supports, and assistance for
the persons described in clause (i) through demonstration and
model activities;
(C) to conduct research, which may include basic or applied
research, evaluation, and the analysis of public policy in areas
that affect or could affect, either positively or negatively,
individuals with developmental disabilities and their families; and
(D) to disseminate information related to activities undertaken
to address the purpose of this title, especially dissemination of
information that demonstrates that the network authorized under this
subtitle is a national and international resource that includes
specific substantive areas of expertise that may be accessed and
applied in diverse settings and circumstances; and
(4) funding for-
(A) national initiatives to collect necessary data on issues that
are directly or indirectly relevant to the lives of individuals with
developmental disabilities;
(B) technical assistance to entities who engage in or intend to
engage in activities consistent with the purpose described in this
subsection or the policy described in sub-section (c); and
(C) other nationally significant activities.
POLICY. - It is the policy of the United States that all
pro-grams, projects, and activities receiving assistance under this
title shall be carried out in a manner consistent with the principles
that-
(1) individuals with developmental disabilities, including those
with the most severe developmental disabilities, are capable of
self-determination, independence, productivity, and integration and
inclusion in all facets of community life, but often require the
provision of community services, individualized supports, and other
forms of assistance;
(2) individuals with developmental disabilities and their families
have competencies, capabilities, and personal goals that should be
recognized, supported, and encouraged, and any assistance to such
individuals should be provided in an individualized manner, consistent
with the unique strengths, resources, priorities, concerns, abilities,
and capabilities of such individuals;
(3) individuals with developmental disabilities and their families
are the primary decisionmakers regarding the services and supports
such individuals and their families receive, including regarding
choosing where the individuals live from available options, and play
decisionmaking roles in policies and programs that affect the lives of
such individuals and their families;
(4) services, supports, and other assistance should be pro-vided in
a manner that demonstrates respect for individual dignity, personal
preferences, and cultural differences;
(5) specific efforts must be made to ensure that individuals with
developmental disabilities from racial and ethnic minority backgrounds
and their families enjoy increased and meaningful opportunities to
access and use community services, individualized supports, and other
forms of assistance available to other individuals with developmental
disabilities and their families;
(6) recruitment efforts in disciplines related to developmental
disabilities relating to pre-service training, community training,
practice, administration, and policymaking must focus on bringing
larger numbers of racial and ethnic minorities into the disciplines in
order to provide appropriate skills, knowledge, role models, and
sufficient personnel to address the growing needs of an increasingly
diverse population;
(7) with education and support, communities can be accessible to
and responsive to the needs of individuals with developmental
disabilities and their families and are enriched by full and active
participation in community activities, and contributions, by
individuals with developmental disabilities and their families;
(8) individuals with developmental disabilities have access to
opportunities and the necessary support to be included in community
life, have interdependent relationships, live in homes and
communities, and make contributions to their families, communities,
and States, and the Nation;
(9) efforts undertaken to maintain or expand community-based living
options for individuals with disabilities should be monitored in order
to determine and report to appropriate individuals and entities the
extent of access by individuals with developmental disabilities to
those options and the extent of compliance by entities providing those
options with quality assurance standards;
(10) families of children with developmental disabilities need to
have access to and use of safe and appropriate child care and
before-school and after-school programs, in the most integrated
settings, in order to enrich the participation of the children in
community life;
(11) individuals with developmental disabilities need to have
access to and use of public transportation, in order to be independent
and directly contribute to and participate in all facets of community
life; and
(12) individuals with developmental disabilities need to have
access to and use of recreational, leisure, and social opportunities
in the most integrated settings, in order to enrich their
participation in community life.
PADD Program Eligibility Criteria
GENERAL - The term ''developmental disability'' means a severe,
chronic disability of an individual that-
(i) is attributable to a mental or physical impairment or
combination of mental and physical impairments;
(ii) is manifested before the individual attains age 22;
(iii) is likely to continue indefinitely;
(iv) results in substantial functional limitations in 3 or more of
the following areas of major life activity
(I) Self-care
(II) Receptive and expressive language.
(III) Learning.
(IV) Mobility.
(V) Self-direction.
(VI) Capacity for independent living.
(VII) Economic self-sufficiency; and
(v) reflects the individual's need for a combination and sequence
of special, interdisciplinary, or generic services, individualized
supports, or other forms of assistance that are of lifelong or
extended duration and are individually planned and coordinated.
INFANTS AND YOUNG CHILDREN. - An individual from birth to age 9,
inclusive, who has a substantial developmental delay or specific
congenital or acquired condition, may be considered to have a
developmental disability without meeting 3 or more of the criteria
described in clauses (i) through (v) of subparagraph (A) if the
individual, without services and supports, has a high probability of
meeting those criteria later in life.
PADD Program Goals
GOAL A: The Disability Law
Center of Alaska, through its PADD Program, Will Strive Toward
Eliminating Abuse, Neglect And Exploitation Of Individuals with
Developmental Disabilities.
Area(s) of Emphasis: Quality
Assurance, Health
Priority 1:
Investigation/Prevention of Abuse and Neglect.
Whenever a report or complaint is received alleging danger to the
health and safety of a person with a disability it becomes the
agency’s number one priority. The Protection and Advocacy system was
established to prevent abuse and neglect from occurring within
institutions, but because of changes which have allowed more people
with disabilities to live in the community instead of facilities
like large nursing homes, the Disability Law Center responds to this
priority wherever it may be occurring.
The term "abuse" means any act or failure to act by an employee of a
facility rendering care or treatment which was performed, or which was
failed to be performed, knowingly, recklessly, or intentionally, and
which caused, or may have caused, injury or death to an individual with
a developmental disability. Forced medication is considered a form of
abuse.
The term "neglect" means a negligent act or omission by any
individual responsible for providing services in a facility rendering
care or treatment which caused or may have caused injury or death to an
individual with a developmental disability or which placed a individual
with a developmental disability at risk of injury or death, and includes
an act or omission such as the failure to establish or carry out an
appropriate individual program plan or treatment plan for an individual
with a developmental disability, the failure to provide adequate
nutrition, clothing, or health care to a individual with a developmental
disability, or the failure to provide a safe environment for an
individual with a developmental disability, including the failure to
maintain adequate numbers of appropriately trained staff.
The term "facilities" may include, but need not be limited to,
hospitals, nursing homes, community facilities for individuals with
developmental disabilities, board and care homes, homeless shelters, and
jails and prisons.
Objectives:
- To ensure that all federal,
state, and local agencies charged with the responsibility of
investigating complaints of abuse and neglect of individuals
with developmental disabilities conduct their investigations
in a timely, thorough and objective manner;
- To investigate reports of
abuse and neglect of individuals with developmental
disabilities when, after appropriate notice, the responsible
agency fails to respond to the complaint in a timely manner;
- To investigate reports of
abuse and neglect of individuals with developmental
disabilities where incidents continue to occur despite prior
investigations by the appropriate federal, state or local
agency;
- To collaborate with other
investigative agencies to ensure that the system responds
quickly and reliably to complaints of abuse and neglect;
- To meet with appropriate
agencies with the goal of achieving systemic changes in the
area of discharge planning.
- To report 3 times per year
to the Governor’s Council on Disabilities and Special
Education any inappropriate use of restraint, seclusion,
excessive force and other punitive methods of controlling
individuals with developmental disabilities at state and
private facilities.
Strategic/Resource Guidance:
Complaints of abuse and neglect alleging death or serious injury
will be prioritized.
Complaints originating in facilities with repeated complaints of
abuse and neglect will be prioritized.
If a complaint of abuse or neglect is being investigated by the state
Office of Children Services or the local/state police, DLC will delay
its own investigation pending the outcome of that investigation.
GOAL B: The Disability Law
Center of Alaska, through its PADD Program, Will Ensure That
Individuals with Developmental Disabilities Have Access To
Government Benefits
Area(s) of Emphasis: Health,
Housing
Priority 1: To increase
access to financial entitlements and appropriate medical benefits
for individuals with developmental disabilities.
Access to basic individual and community supports through
government assistance programs is necessary for people with
disabilities before they can consider independent living, continued
education and employment. These supports include Social Security
programs, Alaska Public Assistance, in-home support services,
individualized support from state government and private providers,
Medicaid, Medicare, and managed care among others. For children with
disabilities, access to the expanded scope of benefits under the
federal Medicaid requirement of EPSDT (Early and Periodic Screening
Diagnosis and Treatment) means the difference between being able to
remain in the home and institutionalization.
The complicated and recently revised rules governing the provision of
benefits and the bureaucracies that administer these public benefit
programs are confusing. This confusion frequently results in an unjust
denial of benefits. In addition, cutbacks in benefits at the state and
federal level, as well as the elimination of various consumer
protections, will erode the ability of people with disabilities to live
independently.
Objectives:
- To assist 10 individuals
with developmental disabilities to obtain and maintain SSI/SSDI
and related benefits, such as Medicaid and Adult Public
Assistance;
- To assist 25 individuals
with developmental disabilities to obtain and maintain
Medicaid benefits;
- To advocate, in collaboration with consumers, providers and other advocates,
for a reduction in the Medicaid waitlist;
- To conduct 4 trainings
statewide on social security benefits and the administrative
appeals process.
Strategic/Resource Guidance:
Assisting individuals with developmental disabilities obtain
social security benefits does not encompass the initial application
process.
Assisting individuals with developmental disabilities maintain social
security benefits does not encompass the provision of direct legal
assistance for continuing disability reviews.
Assisting individuals with developmental disabilities maintain social
security benefits does not encompass the provision of direct legal
assistance for overpayment issues unless the individual demonstrates a
significant cognitive impairment.
GOAL C: The Disability Law
Center of Alaska, Through its PADD Program, Will Ensure That
Individuals with Developmental Disabilities Are Educated in the
Least Restrictive Environment
Area(s) of Emphasis: Education,
Early Intervention
Priority 1: Promote access to
appropriate education for students with disabilities in situations
where Least Restrictive Environment or Discipline is at issue
Under state and federal law, students with disabilities have the
right to be educated in integrated settings and to participate
meaningfully in academic and non-academic activities with
non-disabled children. Lack of information about special education
laws is just one of many barriers preventing Alaskans with
disabilities from benefiting from their special education programs.
The Disability Law Center assists parents in obtaining a free
appropriate public education (FAPE) for their children with
disabilities in the least restrictive environment. To that end, we
have prioritized the following to address the most immediate and
significant barriers. Through these specific priorities we aim to
increase equal and meaningful educational opportunities for students
with disabilities.
Objectives:
- To advocate on behalf of 75
students with developmental disabilities who are subject to
suspension, expulsion, limited-day programs and arbitrary
transfers resulting in their exclusion from regular schools,
as a substitute for adequate and appropriate educational
programs;
- To monitor State and
district implementation of the High School Graduation
Qualifying Exam and the Benchmark exams for compliance with
settlement obtained in the class action litigation, as well as
federal and state laws, such as the Individuals with
Disabilities Education Act and Section 504; assist 5 students
obtain appropriate testing accommodations/modifications;
- To develop a program to
facilitate outreach and education to individuals with
developmental disabilities in juvenile facilities across the
state, and juveniles in adult correctional facilities, to
ensure the delivery of special education services;
- To advocate for appropriate
special education services on behalf of 10 children in, or at
risk of placement in, residential facilities in Alaska or
out-of-state;
- To conduct 15 trainings
statewide on special education rights and the self-advocacy
techniques.
Strategic/Resource Guidance:
Students with developmental
disabilities who are receiving no special education services will be
prioritized over students receiving services, although those
services may be inadequate.
Staff will not be available to
attend IEP meetings unless staff attendance is likely to facilitate
placement in the least restrictive environment.
Special education trainings will be
limited to pre-arranged conferences that attract a sufficient number
of individuals to warrant the commitment of agency resources.
GOAL D: The Disability Law Center of Alaska, through its PADD
Program, Will Facilitate The Community Integration Of Individuals
With Developmental Disabilities By Protecting Their Rights To
Receive Appropriate Supports And Services In The Most Integrated
Setting
Area(s) of Emphasis: Housing,
Quality Assurance, Employment, Transportation
Priority 1. Advocate on
behalf of people with developmental disabilities who face barriers
to community integration efforts.
Under state and federal laws people with disabilities have the
right to live in integrated settings in their local communities with
the appropriate supports and services. However, many individuals
with developmental disabilities who are in both large and small
facilities encounter barriers that make it difficult or prevent them
from living in an integrated setting. Examples of such barriers
include rules and policies that have a disparate impact on
individuals with developmental disabilities, the absence of
community-based services, and the diversion of scarce resources away
from community-based services.
Objectives:
- To advocate on behalf of 5
individuals with developmental disabilities who have
complaints of Fair Housing Act and other housing rights
violations;
- To monitor all applications
for Certificates of Need for the establishment of additional
nursing home beds or other residential facilities to prevent
the diversion of scarce resources from community-based
programs and services;
- To advocate against any
changes to the Certificate of Need statutes that would
eliminate public comment on the necessity of facilities for
people with disabilities;
- To meet with appropriate
agencies with the goal of achieving systemic changes in the
areas of school-to-work transition services;
- To monitor state efforts to
implement a comprehensive, effectively working plan for
ensuring community-based services for individuals with
disabilities in compliance with the Americans with
Disabilities Act and the U.S. Supreme Court’s decision in
Olmstead.
Strategic/Resource Guidance:
If a complaint of Fair Housing violation is being, or should be,
investigated by another agency, such as the Office of Housing and
Urban Development or the Alaska Housing Finance Corporation, DLC may
delay its own investigation or make a referral to the appropriate
agency. DLC will, however, review all referred investigations to
ensure that the investigation is rigorous, thorough and objective.
Priority 2. Advocate on
behalf of people with developmental disabilities who face
discrimination in the community that jeopardizes their income, and
therefore their ability to remain in an integrated setting.
For any of us to remain in our homes in the community, we require
a steady source of income, be it from employment or government
benefits. For individuals with developmental disabilities, obtaining
and/or maintaining employment is wrought with hurdles, from the
application process to subsequent job accommodations. Individuals
who have guardians or conservators or representative payees managing
their income often express concerns over the management of their
money and whether sufficient funds remain in their accounts to pay
the bills.
Objectives:
- To advocate on behalf of 5
individuals with developmental disabilities who face
discrimination in the hiring process, promotion process,
termination where there was a failure to provide reasonable
accommodations;
- To advocate on behalf of 5
individuals who unable to participate in employment or in
their communities because of a lack of accessible
transportation;
- To advocate on behalf of, or
provide self-advocacy assistance to, 5 individuals with
developmental disabilities with respect to their rights when
their income is managed by a conservator, guardian, or
representative payee.
Strategic/Resource Guidance:
Assisting individuals with employment related matters may not, in
all instances, include court or administrative representation
(unless individuals qualifies for assistance under PABSS), but may
involve the provision of self-advocacy assistance and training.
If a complaint of employment discrimination is being, or should be,
investigated by another agency, such as the Anchorage Equal Rights
Commission, the Alaska State Commission on Human Rights, or the Equal
Employment Opportunity Commission, DLC may delay its own investigation
or make a referral to the appropriate agency. DLC will, however, review
all referred investigations to ensure that the investigation is
rigorous, thorough and objective.
PAIR PROGRAM
PURPOSE, ELIGIBILITY AND GOALS
2005 Federal Fiscal Year
PAIR Congressional Findings and
Statement of Purpose
The purpose of this section is to support a system in each State
to protect the legal and human rights of individuals with
disabilities who—
-
(A) need services that are beyond the scope of services authorized
to be provided by the client assistance program under section 732 of
this title; and
-
(B)
-
(i) are ineligible for protection and advocacy programs under
subtitle C of the Developmental Disabilities Assistance and Bill of
Rights Act of 2000 [42 U.S.C.A. §§ 15041 et seq.] because the
individuals do not have a developmental disability, as defined in
section 102 of such Act (42 U.S.C. 6002) [FN1]; and
-
(ii) are ineligible for services under the Protection and Advocacy
for Mentally Ill Individuals Act of 1986 (42 U.S.C. 10801 et seq.)
because the individuals are not individuals with disability, as
defined in section 102 of such Act (42 U.S.C. 10802).
This section shall not be construed to require the provision of
protection and advocacy services that can be provided under the
Assistive Technology Act of 1988.
PAIR Program Eligibility Criteria
Eligible individual with a disability means an individual who
- needs protection and advocacy services that are beyond the scope
of services authorized to be provided by the Client Assistance Project
(CAP) under section 112 of the Rehabilitation Act; and
- is ineligible for Protection and Advocacy programs under PADD or
PAIMI.
PAIR Program Goals
GOAL A: The Disability Law
Center of Alaska, through its PAIR Program, Will Strive Toward
Eliminating Abuse, Neglect And Exploitation Of Persons With
Disability.
Priority 1:
Investigation/Prevention of Abuse and Neglect.
Whenever a report or complaint is received alleging danger to the
health and safety of a person with a disability it becomes the
agency’s number one priority. The Protection and Advocacy system was
established to prevent abuse and neglect from occurring within
institutions, but because of changes which have allowed more people
with disabilities to live in the community instead of facilities
like large nursing homes, the Disability Law Center responds to this
priority wherever it may be occurring.
The term "abuse" means any act or failure to act by an employee of a
facility rendering care or treatment which was performed, or which was
failed to be performed, knowingly, recklessly, or intentionally, and
which caused, or may have caused, injury or death to a individual with
disability. Forced medication is considered a form of abuse.
The term "neglect" means a negligent act or omission by any
individual responsible for providing services in a facility rendering
care or treatment which caused or may have caused injury or death to a
individual with disability or which placed a individual with disability
at risk of injury or death, and includes an act or omission such as the
failure to establish or carry out an appropriate individual program plan
or treatment plan for a individual with disability, the failure to
provide adequate nutrition, clothing, or health care to a individual
with disability, or the failure to provide a safe environment for an
individual with disability, including the failure to maintain adequate
numbers of appropriately trained staff.
The term "facilities" may include, but need not be limited to,
hospitals, nursing homes, community facilities for individuals with
disability, board and care homes, homeless shelters, and jails and
prisons.
Objectives:
- To ensure that all federal,
state, and local agencies charged with the responsibility of
investigating complaints of abuse and neglect of individuals
with disabilities conduct their investigations in a timely,
thorough and objective manner;
- To investigate reports of
abuse and neglect of individuals with disabilities when, after
appropriate notice, the responsible agency fails to respond to
the complaint in a timely manner;
- To investigate reports of
abuse and neglect of individuals with disabilities where
incidents continue to occur despite prior investigations by
the appropriate federal, state or local agency;
- To collaborate with other
investigative agencies to ensure that the system responds
quickly and reliably to complaints of abuse and neglect.
Strategic/Resource Guidance:
Complaints of abuse and neglect alleging death or serious injury
will be prioritized.
Complaints originating in facilities with repeated complaints of
abuse and neglect will be prioritized.
If a complaint of abuse or neglect is being investigated by the local
or state police, DLC will delay its own investigation pending the
outcome of that investigation.
GOAL B: The Disability
Law Center of Alaska, through its PAIR Program, Will Ensure That
Individuals With Disabilities Have Access To Government Benefits
Priority 1: To increase
access to financial entitlements and appropriate medical benefits
for individuals with disability.
Access to basic individual and community
supports through government assistance programs is necessary for
people with disabilities before they can consider independent
living, continued education and employment. These supports include
Social Security programs, Alaska Public Assistance, in-home support
services, individualized support from state government and private
providers, Medicaid, Medicare, and managed care among others.
The complicated rules governing the provision of
benefits and the bureaucracies that administer these public benefit
programs are confusing. This confusion frequently results in an unjust
denial of benefits. In addition, cutbacks in benefits at the state and
federal level, as well as the elimination of various consumer
protections, will erode the ability of people with disabilities to live
independently.
Objectives:
- Assist 125 people with disabilities to obtain and maintain SSI/SSDI and related
benefits such as Medicaid and Adult Public Assistance;
- To conduct 4 trainings
statewide on social security benefits and the administrative
appeals process.
Strategic/Resource Guidance:
Assisting individuals with disabilities obtain social security
benefits does not encompass the initial application process.
Assisting individuals with disabilities maintain social security
benefits does not encompass the provision of direct legal assistance for
continuing disability reviews.
Assisting individuals with disabilities maintain social security
benefits does not encompass the provision of direct legal assistance for
overpayment issues unless the individual demonstrates significant
cognitive impairments.
GOAL C: The Disability Law
Center of Alaska, through its PAIR Program, Will Promote
Self-Determination And Integration Of Persons With Disabilities In
The Community Through Their Residency, Work, Recreation, Education
And Participation In The Life Of The Community.
Area(s) of Emphasis: Employment,
Housing, Transportation, Recreation,
Priority 1: Enforcement of
Civil Rights Statutes such as: The Americans with Disabilities Act
(ADA) and Section 504 of the Rehabilitation Act
Alaskans with disabilities are capable of, and entitled to,
self-determination, independence, employment, recreation and
inclusion in all facets of community life. Unfortunately, barriers
to full inclusion persist. For example, buildings housing
government, medical, commercial and, in some cases, social services
are inaccessible to individuals with mobility impairments despite
the passage of the Americans with Disabilities Act (ADA) over ten
years ago. Barriers to employment, transportation, public
accommodations, public services, and telecommunications have imposed
staggering economic and social costs on Alaska and have undermined
well-intentioned efforts to educate, rehabilitate, and employ
individuals with disabilities. Discriminatory barriers can involve
outright intentional exclusion, the discriminatory effects of
architectural and transportation barriers, overly restrictive rules
and policies, failure to make modifications, exclusionary
qualification, standards and criteria, segregation and relegation to
lesser services, programs, activities, benefits or other
opportunities. Breaking down these barriers, through the enforcement
of laws such as the ADA, will enable society to benefit from the
skills and talents of individuals with disabilities, will lead to
fuller, more productive lives for all Alaskans.
Objectives:
- To advocate on behalf of 30
individuals with disabilities who have been denied access to
programs and/or services in violation of the American with
Disabilities Act, Section 504 of the Rehabilitation Act, and
comparable state and local laws;
- To advocate on behalf of 5
individuals with disabilities who have complaints of Fair
Housing Act and other housing rights violations in Alaska’s
community living programs, such as assisted living homes,
board and care, foster homes and public housing projects;
- To advocate to bring
Alaska’s private demand response system (taxi business) into
compliance with the Americans with Disabilities Act.
Strategic/Resource Guidance:
Examples of ADA and §504 cases include architectural barriers in
buildings, parking deficiencies, individuals denied access to
programs/services because they have a service/therapeutic animal,
individuals denied medical, legal, or community services due to the
failure of the provider to obtain interpreter services, and
individuals with disabilities who face discrimination in hiring,
promotion, or termination where there was a failure to provide
reasonable accommodations.
If a complaint of employment discrimination is being, or should be,
investigated by another agency, such as the Anchorage Equal Rights
Commission, the Alaska State Commission on Human Rights, or the Equal
Employment Opportunity Commission, DLC may delay its own investigation
or make a referral to the appropriate agency. DLC will, however, review
all referred investigations to ensure that the investigation is
rigorous, thorough and objective.
If a complaint of Fair Housing violation is being, or should be,
investigated by another agency, such as the Office of Housing and Urban
Development or the Alaska Housing Finance Corporation, DLC may delay its
own investigation or make a referral to the appropriate agency. DLC
will, however, review all referred investigations to ensure that the
investigation is rigorous, thorough and objective.
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