We’re Here to Help You Voice
of the Retarded (VOR) and Friends of Retarded Citizens of Connecticut
(FORConn) are pleased to share with you an overview of services and
laws related to people with mental retardation and developmental disabilities
and their families. We are hopeful that this information will inform
and empower individuals and their families as they navigate through
the sometimes difficult and complex service system, which has been,
developed to help them. Federal Laws and Programs Americans
with Disabilities Act (ADA): The ADA prohibits discrimination
on the basis of disability in employment, state and local government,
public accommodations, commercial facilities, transportation, and telecommunications.
To be protected by the ADA, one must have a disability or have a relationship
or association with an individual with a disability. The U.S. Department
of Justice has a website at http://www.usdoj.gov/crt/ada/adahom1.htm
The ADA Information Line (800-514-0301) for questions pertaining to
ADA claims. Olmstead
v. L.C.: This 1999 landmark Supreme Court decision interpreted
Title II of ADA, which directs State and Local Government activities.
The Court held that an individual is entitled to services in the most
integrated setting appropriate to their needs, including community-based
supports or institutional care. The Court found that community-based
supports were required when deemed appropriate by the State's treating
professionals, when chosen by the individual (or his/her guardian),
and in consideration of the availability of state resources and the
state's obligation to other citizens. Developmental
Disabilities Assistance and Bill of Rights Act (DD Act): This
federal law creates and funds the state-based Developmental Disabilities
Councils, Protection and Advocacy Agencies, and University Centers for
Excellence (formerly University Affiliated Programs). Every state, including
Connecticut, has these programs. See their website at http://www.acf.dhhs.gov./programs/add
for more information. VOR secured the
"primary decision maker" language in 1993. FORConn proposed
adding this language to Connecticut laws related to persons with mental
retardation in the 2001 session of the General Assembly. See Public
Act 01-140, Section 3. Medicaid:
Medicaid is a medical assistance program jointly financed by state and
federal governments for low income and disabled individuals. Among the
services that Medicaid covers are: in-patient hospital services, outpatient
hospital services, laboratory and x-ray services, skilled nursing home
services, physicians' services, physical therapy, hospice care, and
rehabilitative services. Medicaid also funds residential settings licensed
as Intermediate Care Facilities for the Mentally Retarded (ICFs/MR)
or Home and Community-Based Services Waiver (HCBS). In Connecticut the
Regional Centers, Southbury Training School and some Group Homes in
the community offer ICF/MR service. Medicaid law requires that states provide individuals with mental retardation and their families the right to choose between Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) and Home and Community-Based Services Waiver (HCBS). Congress is presently considering the Family Opportunity Act, a bill that proposes expanding the Medicaid coverage available to eligible families of children with special needs. For more information see the website http://www.cms.gov/consumers
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KNOW YOUR RIGHTS! Federal Laws and Programs (continued) Medicare:
Some people with disabilities under age 65 are eligible for Medicare;
some are even dually eligible for Medicaid and Medicare. Medicare Part
A covers care in hospitals, skilled nursing facilities, hospice and
some home health services that are deemed medically necessary. Medicare
Part B services are available for a monthly premium and include services
like physical and occupational therapy, and some home health services.
For information on services and eligibility see the website http://www.medicare.gov. Centers for
Medicare and Medicaid Services (CMS): CMS, formerly the Health
Care Financing Administration (HCF) is a federal agency within the U.S.
Department of Health and Human Services. CMS runs the Medicare and Medicaid
programs – two national health care programs that benefit about
75 million Americans. And with the Health Resources and Services Administration,
CMS runs the State Children’s Health Insurance Program (SCHIP),
a program that is expected to cover many of the approximately 10 million
uninsured children. In the United States. CMS, with the Department of
Labor and Treasury, helps Americans and small companies get and keep
health insurance coverage, and helps eliminate discrimination based
on health status for people buying health insurance. See http://www.cms.gov
for more information. The Office of Special Education Programs (OSEP): OSEP is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts. IDEA (see page 4) authorizes formula grants to states, and discretionary grants to institutions of higher education and other non-profit organizations to support research, demonstrations, technical assistance and dissemination, technology and personnel development and parent training and information centers. See the website http://www.ed.gov/offices/OSERS/OSEP/index.html for more information. The Rehabilitation
Act: The Rehabilitation Act prohibits discrimination on the
basis of disability in federal programs. Supplemental Security Income (SSI): SSI is a federal program that provides monthly financial assistance payments to certain individuals including persons with disabilities that have limited income and assets and who are 65 years of age, or blind, or have another disability that may be eligible to receive SSI. Social Security's definition of "disability" is a "physical or mental impairment that is expected to keep you from doing any substantial work for at least a year or is expected to result in death." Substantial work is considered earnings of $500 per month or more. Many states, such as Connecticut, have programs that provide financial supplements to individuals who receive SSI. For more information about the State Supplemental program in Connecticut, contact your local Department of Social Services office. See http://www.state.ct.us/opapd/publication/social_security_income_ssi.htm for more information. Connecticut
Laws Related to Mental Retardation An Act Concerning
the Rights of Persons under Supervision of the Commissioner of Mental
Retardation and Guardianship of Persons with Mental Retardation (Public
Act 01- 140) provides a description of the operation of the
DMR (Sec. 1), the rights of persons under the care of the DMR (Sec.
2), guardianship of persons with mental retardation (Sec. 3), and a
study which is to be conducted on the law on guardianship (Sec. 4).
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Connecticut Laws Related to Mental Retardation (cont.) The Birth–Three
Program: The Birth to Three (B-3) Program in Connecticut provides
families with early intervention services and offers parents information
on how best to enhance their child's development. Part H of the Individuals
with Disabilities Education Act (see page 4) is a federal entitlement
program that provides states with funding to develop a comprehensive
system of intervention services for infants and toddlers with disabilities
in the following areas of development: cognitive, physical, communications,
social or emotional, and adaptive skills. DMR
Advisory Commission on Services and Supports for Persons with Developmental
Disabilities: In accordance with PA 00-135 Section 19 (b), the purpose
of the Advisory Commission on Services and Supports for Persons with
Developmental Disabilities (Commission), established in 2000, is to
advise the Commissioner of Mental Retardation concerning the need for
services and supports for individuals with developmental disabilities
who do not have a condition defined as mental retardation. The Commission's
advice shall include, but not be limited to, (1) defining the population
to be served, (2) identifying the types of services and supports needed,
(3) identifying how such services and supports can best be delivered,
and (4) identifying the costs of such services and supports. See http://www.dmr.state.ct.us/advisory.htm Special Education For assistance
in understanding parent and child rights in the special education process,
contact the Director of Special Education in your local school district,
or the Bureau of Special Education and Pupil Services, Connecticut Department
of Education (860) 807-2025. You can read and access many parent guides
for special education from the CT State Department of Education website
at http://www.state.ct.us/sde/deps/special/index.htm
. Also see Wright's Law for general education information at
www.wrightslaw.com Individuals
with Disabilities Education Act (IDEA): IDEA concerns the provision
of special education and related services to eligible children with
disabilities. These children are to have available to them a free appropriate
public education in the least restrictive environment. It requires public
school systems to develop, with a team of knowledgeable persons including
the parents and the child, appropriate Individualized Education Programs
(IEPs) for each child. The specific special education and related services
outlined in each IEP reflect the needs of each student. See http://www.ideapractices.org
for more help. Part
H of the IDEA is a federal entitlement program that provides states
with funding to develop a comprehensive system of intervention services
for infants and toddlers with disabilities in the following areas of
development: cognitive, physical, communications, social or emotional,
and adaptive skills. Part H requires that states use a family-centered
approach that considers both the child and family needs and consults
with the family in selecting the most appropriate services to meet these
needs.
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KNOW
YOUR RIGHTS! Getting Started The
Connecticut Department of Mental Retardation (DMR) administers all
state – sponsored programs and services for persons with mental
retardation. DMR = Programs, Supports and Services
Early
Intervention: The Birth to Three Program (B-3) : The B-3 Program
in Connecticut provides Families with early intervention services
and offers parents information on how best to enhance their child’s
development. Starting
in 1987 the Connecticut Department of Education received state and
federal funds to administer, supervise and monitor the B-3 Program.
In 1996 the DMR become responsible for administering this program.
Individuals and families interested in applying for services in this
program should call the Birth–Three Info line at (860) 418-6147. Residential Options Funded by DMR
Independent Living: Some people with mental retardation
need no staff support to manage a household on their own. They live
in apartments, houses, and condominiums and manage their residential
life just like any person without mental retardation. See http://www.dmr.state.ct.us/ssdesc.htm Supported
Living Arrangement: (SLAs) Some people need minimal hours
of support to live on their own. This staff support may be in the
form of assistance with budgets, shopping and/or leisure activities.
People living in SLAs get staff support from a few hours a day to
only a few hours a month, depending on the needs of the person. See
http://www.dmr.state.ct.us/ssdesc.htm Community Living Arrangement: (CLAs) People who need 24-hour support are provided with staff in group home settings. Usually, two to six people will share an apartment or house and will have staff available to them 24 hours a day. Self-Determination:
Innovative self-determination projects are those in which persons
and families determine the outcomes. Individuals have control over
the planning process for all of their needs. They have control of
a sum of Medicaid and state dollars to create an individual budget,
which they have authority to spend on the support expenses and personal
needs of their own choosing, purchased through a variety of brokering
methods. |
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KNOW
YOUR RIGHTS! Residential Options Funded by DMR (cont). Community
Training Homes: (CTHs) People with mental retardation live in
a family setting that is not within their own family. People in these
settings live with a family that has received training and licensing
from DMR. See http://www.dmr.state.ct.us/ssdesc.htm Regional
Centers: Regional centers are facilities with over 16 people.
Connecticut has eight residential centers that provide 24 hour staffing
for the people who live there. These are licensed as Intermediate Care
Facilities for the Mentally Retarded. Usually, persons living in a residential
center also receive their day services at the same facility. See http://www.dmr.state.ct.us/ssdesc.htm A
very large proportion of the STS residents is severely or profoundly
retarded; many of them have other disabilities. The Probate Court has
approved the appointment of Plenary Guardians for 94% of the residents. STS
residents live in 48 residences, many of which are similar to group
homes. They participate in a variety of day programs on campus and in
the community. These programs include Supported Employment at local
businesses, employment in STS-operated ventures, job skills training,
Sheltered Employment, and Community Experiences. Residents have many
opportunities to pursue leisure-time activities off-campus in community
settings. DMR Funded Day Programs Competitive
Employment: Competitive Employment means working in the community
doing jobs that non-disabled people do. Supported Employment: Supported
Employment means working in the community with support staff. Community
Work Centers: Community Work Centers (Sheltered Workshops) are
places where people come to do a variety of jobs for which they are
paid according to their capability. See http://www.varcainc.com
and http://www.thekennedycenter.org
Opportunities for Older Adults (OOA): Opportunities for Older Adults are programs designed for seniors. Each program is tailored to the unique needs of each individual--- physical, mental and emotional. Since these needs change as people age, the programs have to be adjusted frequently. Ombudsperson The
Office of the DMR Ombudsperson created in 2001 works on behalf of consumers
and their families. The office addresses complaints or problems regarding
access to services or equity in treatment. The results and nature of
complaints and concerns are communicated to the DMR, the State Legislators
and the Council on MR. See http://www.dmr.state.ct.us
or call toll free 1-866-737-0331 |
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KNOW
YOUR RIGHTS! Connecticut
Advocacy Connecticut
Parent Advocacy Center, INC.: The Connecticut Parent Advocacy
Center Is a statewide non-profit organization that offers information
and support to parents of children with disabilities and the professionals
who work with them. Contact: 338 Main Street, Niantic CT 06357
(860)739-3089 V/TDD Toll Free 1-800-445-CPAC E-mail us at: cpac@cpacinc.org
Satellite Office: Fair Haven Community Health Center 374 Grand
Avenue New Haven, CT 06513 (203)776-3211 (Spanish speaking staff available)
http://www.cpacinc.org Easter Seals of Connecticut, Inc.- Their mission is to create solutions that change the lives of children and adults with disabilities or special needs, their families and communities. They offer comprehensive programs and services to help support maximum independence and quality of life for individuals with disabilities. Address/Phone: 85 Jones Street, Hebron, CT 06248 Tel:860-228-9438 http://www.eastersealsofct.org/ Friends of
Retarded Citizens of Connecticut (FORConn) - FORConn is the
only Connecticut family advocacy organization for those persons with
mental retardation and their families that advocates for a full range
of choices of services for all ages, and in all places - including place
of residence, work, education, play and worship. Contact:
Edward D. Walen, President, 200 Leeder Hill Drive apt. 326, Hamden, CT
06517; http://www.forconn.org. National Advocacy & Information President's Committee for People with Intellectual Disabilities -Nearly 30 million, or one in ten families in the United States are directly affected by a person with mental retardation at some point in their lifetime. Mental retardation presents a major challenge to the social, educational, health, and economic systems within the United States. The President's Committee for People with Intellectual Disabilities was first established in 1966 by Executive Order to focus on this critical subject of national concern. Goals include the assurance of full citizenship rights of people with mental retardation, the provision of all necessary supports to individuals and families, the reduction of the occurrence and severity of mental retardation and the promotion of the widest dissemination of information of models, programs, and services within the field of mental retardation. Please send questions or comments to: pcpid@acf.dhhs.gov; Address: PCPID, 370 L'Enfant Promenade, S.W. Suite 701 Washington, D.C. 20447-0001 (202) 619-0634, http://www.acf.dhhs.gov/programs/pcpid/ Voice of Retarded (VOR): VOR is a national organization advocating on behalf of individuals with mental retardation and their families. VOR is the only national organization speaking out for the rights of families to be the primary decision-makers in the policies, programs and services affecting their loved ones with mental retardation. The organization actively challenges initiatives that aim to eliminate service options and deny families they’re right to participate in the decision-making process. Membership for individuals is just $25 per year. Member benefits include a quarterly newsletter, weekly e-mail update, action alerts, annual membership meeting and Washington Initiative, individual and national advocacy. Contact: Tamie Hopp, Executive Director, VOR, 5005 Newport Drive, Suite 108, Rolling Meadows, Illinois, 60008; 605-399- 1624 direct; vor@compuserve.com; http://www.vor.net. |