1) The document discusses rights and responsibilities for individuals with disabilities in higher education settings. It provides definitions of rights, responsibilities, and rules. 2) It summarizes a DDMI newsletter about an upcoming meeting on legal issues related to guardianship, educational rights, and supporting individuals with intellectual and developmental disabilities. 3) The last section discusses the role of care managers in helping families who have children with developmental disabilities access services and support through wraparound care management organizations. It outlines the goals and challenges of ensuring children's needs are met.

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DDMI QUARTERLY NEWSLETTER
August 2015
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Next DDMI Superuser Meeting:
August 14, 2015 - 10am to 3pm
Rights and Responsibilities
Morning Presentations: 10am - Noon
PLEASE NOTE REVISED AGENDA & PRESENTERS
 Hal Garwin, Esq. – Community Health Law Project:
Guardianship – What does this mean - Describe options
and when to pursue
 Ellen Nalven, Executive Director, Planed Lifetime
Assistance of NJ (PlanNJ): Legal considerations across
the lifespan
 David Krieger- Attorney, US Department of Education -
Office of Civil Rights: Key Educational Issues
Afternoon session: 1-3 p.m.
Small group Q&A opportunities with the presenters and
CSOC representatives
Definitions
Rights and Responsibilities in Higher Education
Are you
Registered?
Please remember
the registration
code is DDMI
What is a Right?
In an abstract sense… It means justice, ethical correctness,
or harmony with the rules of law or the principles of morals.
In a concrete legal sense… It refers to a power, privilege,
demand, or claim possessed by a particular person by virtue
of law. http://legal-dictionary.thefreedictionary.com/right
What is a Responsibility?
A responsibility is something you're required to do as an
upstanding member of a community. Responsibility comes
from the Latin responsus, which means “to respond.” There
are a few different definitions of the noun. It can be
another word for trustworthiness. Also, it can be used to
describe the social force that motivates us to take on
individual responsibilities.
http://www.vocabulary.com/dictionary/responsibility
What are Rules?
Authoritative statements of what to do or not to do in a
specific situation, issued by an appropriate person or
system. It clarifies, demarcates, or interprets a law or policy.
Statements that establishes a principle or standard, and
serve as a norm for guiding or mandating action or conduct.
http://www.businessdictionary.com/definition/rule.html
Individuals with Disabilities Have Rights To…
An equal opportunity to participate in and benefit from
employment, courses, academic programs, services, and
activities offered through the University;
An equal opportunity to work and learn through reasonable
accommodations, auxiliary aids, or services;
Appropriate confidentiality of all disability-related
information except as disclosure is required/permitted by law;
Information made reasonably available in accessible
formats.
Determine whether or not to access accommodations.
Individuals with Disabilities Have Responsibilities To…
Meet qualifications and maintain essential institutional
standards for employment, academic programs, services, and
activities;
Self-identify as an individual with a disability, when an
accommodation is needed, and to seek information, counsel,
and assistance as necessary;
Provide documentation (from an appropriate professional)
of a disability and demonstrate or document how the disability
limits participation in employment, programs, services, or
activities;
http://www.unk.edu/offices/human_resources/aaeo/policies/rights_and_resp
onsibilities_disabilities.php

2. Mission: To identify children’s needs through research,
policy and legal analysis and strategic communications, to
raise awareness of those needs and to work with elected
officials and other decision-makers to enact effective
responses.
http://acnj.org/about-us/
Chart of NJ State Government Agencies providing services
for children and adults with autism. .
http://www.autismnj.org/resources/state_government_ag
encies
Self-help resources to find legal forms, manuals, and
articles to help you answer your legal question, get help
with your legal problem, or just learn more about the law.
http://www.lsnjlaw.org/
Resources
Hope for Families who have Children with DD
Submitted by Denise Thiel, MSW, Senior Care Manager
I have been a Care Manager at Families and
Community Together for one year. I have over four years of
work experience at the Arc of Hunterdon, so I’ve come to know
and understand families who have a child with developmental
disabilities very well. In 2013, the Children’s System of Care
expanded to include children and youth who have
developmental disabilities. Although CMOs have always had
some children who were eligible for DD services and several
with autism, CMOs now serve children with DD as a primary
diagnosis.
Our goal is to help children and their families reach
their fullest potential. Children and teens are referred through
PerformCare who does an assessment of their needs. Then they
are linked to a Care Management Organization (CMO), like
Families and Community Together (FACT) in Union County.
FACT serves approximately 670 youth, and about 20 percent
have a diagnosis of a developmental disability.
Care Managers use the wraparound model to serve
families. This means we find every possible resource in the
community to meet the child’s need at home. Sometimes we
include out of home care, but our goal is always to find the
supports and services in the community based on a family’s
needs. During this process, Care Managers overcome many
barriers to secure services that meet the needs of the youth.
Barriers that I have experienced include lack of DD eligibility,
inadequate support from school districts, agencies that lack
sufficient therapists for this population, and limited out of
home providers in New Jersey.
My first task is to establish rapport and listen to each
family’s unique needs to assist in determining which service is
most beneficial. Sometimes I have to help families identify their
needs because families can be overwhelmed by the system and
often feel frustrated. Typical goals may include: enhancing the
youth’s daily living skills (dressing, brushing teeth, etc.);
reducing dangerous behaviors to self or others; assisting the
caregiver improve their skills to advocate for their child’s
individual needs; and establishing linkages to sustainable
community-based resources. I have connected families with
many community services including Family Success Centers,
Mom 2 Mom, The Arc of New Jersey, Autism NJ, Buddy Ball, and
even the Special Olympics. Families are encouraged to complete
PerformCare’s DD eligibility application in order to qualify for
respite, intensive-in-home (IIH) services, and individual support
services (ISS).
This is very important because it helps families access
Medicaid services. I also encourage a family to create a Child
and Family Team (CFT). This is a group of people interested in
the wellbeing of the child and can include Child Study Team
members, family members, therapists and neighbors. Informal
support partners can really help a family identify needs that
they may not have identified.
Continued…
An active CFT may even discuss specific strategies
and goals that may need to be added to the youth’s
Individualized Educational Plan (IEP), for example,
emphasizing the need for pre-vocational skills and
requesting additional evaluations. Sometimes the family
may need a Functional Behavioral Assessment to create a
plan for future supports.
Care Managers help families overcome system
barriers to ensure youth receive what their entitled to in
the least restrictive environment. Sometimes school or
social services systems are not even aware that they are
creating a barrier to care. A big part of my job is education.
I’m fortunate that our system offers a wide range
of services that address adaptive behavior and skills
development to improve the youth’s independence, safety,
and family functioning. Most families don’t know this. I feel
like I am a guide for families through the complex world of
DD services and eligibility. At times, I also support families
through emotional crisis they experience. I try to remain
open minded and compassionate when assisting families
navigate the system. The role of the Care Manager is
rewarding. I give the family hope. Families must commit to
engage in services as they learn techniques of self-care, to
cope with their child’s behavior, and to build a support
network. The gratitude expressed from caregivers
energizes me to continue to be an active agent of stability.