|

 

-Sibling
Archive
-Sibling Bulletins















 |
 |
 |
|
|
AHRC New York
City
83 Maiden Lane
New York, NY 10038
(212) 780-2500
TDD/TTY:
1-(800) 662-1220 |
|
| |
|
|
|
|
|
|
|
|
 |

SIB is written by members of the Sibling Committee of the AHRC Board of
Directors and is produced and disseminated by AHRC. Past SIB issues are
available here for download in pdf form or abstracts for viewing
online. If you
would like to become part of the sibling mailing list, fill out our
Information Request Form, or call
Annette Spallino at 212-780-2592. |
|
|

SIB
Winter 2008 - Planning for Emergencies - NEW!
SIB
Winter 2005 - What Is It Like to Grow Up With A Mentally Challenged
Sibling? (384 KB)
SIB Winter 2004 - Take a
Break and Enrich Your Sibling's World (40 KB)
SIB Fall 2000
- Genetics & Genetic Counseling (159 KB)
SIB Fall 1998 - Advocacy (81
KB)
SIB Fall 1997 - Health & HealthCare (57 KB)

SIB Fall 2000 - Genetics &
Genetic Counseling
SIB Fall 1998 - Advocacy
SIB Fall 1997 - Health &
HealthCare
SIB Fall 1996 - Respite &
Residential Services
SIB Fall 1995 -
Entitlements
SIB May 1994 - Guardianship
|
|
|
SIB Abstracts
|
|
|
|
SIB Volume 5,
Number 1 Fall 2000
Genetics and Genetic Counseling
|
|
|
The new fall issue of the SIB Bulletin
focuses on a topic that is of great importance to people whose siblings
have mental retardation and other developmental disabilities. The topic
is Genetics and Genetic Counseling, a very useful branch of science that
has made it possible for scientists and doctors to determine some of the
forms of mental retardation that are inherited.
Although a lot remains unknown and geneticists aren’t always
able to provide a definite answer it is important to know that there are
options available to help in the decision making process. A list of valuable Genetic centers throughout the
metropolitan area along with some helpful websites that can provide you
with more detailed information on the subject is also provided. In order
to insure that readers get a true feel of what to expect and what may be
expected of them with regard to genetics and genetic counseling,
“scenarios” are offered from siblings who have undergone genetic
testing and counseling. These siblings share their own experiences as
well as their opinions on the subject. AHRC’s Sibling Committee has gathered a lot of information
in order to provide their readers with a clear, well-rounded
understanding of this difficult and relatively new field of science so
don’t miss it!
to top
|
|
|
|
SIB Volume 4,
Number 1 Fall 1998
Advocacy
To advocate is to
support a particular issue or cause on behalf of others or yourself. The latest
SIB publication focuses on advocating for your sibling with a developmental
disability. Acting as an advocate on your siblings behalf may allow you to
directly affect the issues and concerns you and your sibling with a disability
are faced with daily. SIB offers tips on how siblings can effectively advocate
with their sibling's agency and/or service provider; the best approaches for
making changes at local, state and federal governmental levels and advice
related to public education. Additionally there is guidance on starting an
advocacy group. Recommendations for
specific issues are also offered in scenarios taken from real life situations
where advocating for a sibling had favorable outcomes. This SIB issue contains
a list of some important websites that can assist one in effecting systems
change. Guidelines are also provided to
ensure that your online advocacy attempts will be as effective as possible.
Lastly, the Sibling Committee has included a list of telephone numbers that
will aid you in your attempts to gather
information and to begin networking with others who are in the position
to support your advocacy efforts.
to top
|
|
|
|
SIB Volume 3, Number
2 Fall
1997
Health and Healthcare
Healthcare systems are difficult for most of us to navigate, but people with developmental
disabilities are likely to need special support in this realm. Because they often pay for
healthcare services with Medicaid, people with developmental disabilities are sometimes
less privileged patients than those with more "purchasing power" to wield at
private practices. Communication is also an issue, as people with disabilities might have
trouble providing healthcare workers with necessary information regarding their ailments.
These financial and communication issues are often compounded by the fact that many people
with developmental disabilities have multiple physical problems and sometimes mental
health problems, such as depression and substance abuse. This edition of SIB outlines
several important factors to consider when helping developmentally disabled siblings to
arrange for healthcare. Topics discussed include: Choosing a Health Care Provider (with
information on general medical care, specialized clinics and managed care); Special Needs
to Think About; Caring or Overseeing Care For Your Sibling (including information on
hospitalizations, treatment decisions, informed consent, surrogate court decision making,
advanced directives and home care); Mental Health & Developmental Disabilities (dual
diagnoses); Dental Care; Health and Wellness; and Long-Distance Care. The issue contains
much important information and advice on healthcare matters.
to top
|
|
|
|
SIB Volume 3, Number
1 Fall 1996
Respite and Residential Services
In this issue, the different types of respite services and residential options are
discussed in great detail. Besides providing temporary relief from the stress of constant
caregiving, respite is also described as an experience that can promote readiness for a
later separation and move into a long-term residential placement. "What is
respite?": a definition leads off this section; followed by a description of the
different respite options offered by AHRC. The section on residential placement begins
with the warning that waiting lists for residences are long. It can take years of
persistent effort to achieve a successful placement. This issue describes the different
type of residential options available, discusses the placement process; eligibility
requirements; and key questions to consider in choosing a residence. Three case histories
provide further clarification for readers. A list of important telephone numbers and
resources fill the last two pages of the publication.
to top
|
|
|
|
SIB Volume 2, Number
1 Fall 1995
Entitlements
Although you and your family members may be eligible for entitlements, you will not
receive them until you apply for them. Entitlements are benefits or payments made to
eligible individuals from public or government programs such as Social Security,
Supplemental Security Income, Medicare or Medicaid, and from private programs such as
union annuities or pensions. This issue describes each program ; provides helpful hints
and telephone numbers; provides a list of tips; and presents illustrative case scenarios
based on actual events.
to top
|
|
|
|
SIB Volume1, Number
1 May 1994
Guardianship
By law, a parent is considered to be the natural guard of his/her child until that child
reaches the age of eighteen. This is true for any child, those who are not disabled and
those who are disabled regardless of the extent of their disability. Once a child reaches
the age of eighteen, a parent or sibling or other potential guardian, must petition the
court to grant guardianship status. The function of a guardian is to make decisions on
behalf of the disabled person -- decisions that the court has determined cannot be made by
the person him/herself. In order to continue to make decisions on behalf of the person
with a disability after the age of eighteen a parent or sibling needs to become his/her
legal guardian. Whether to assume guardianship of a disabled brother or sister may be the
single most important decision a sibling can make. This issue of SIB speaks about what
guardianship is and what it is not; looks at the question of whether guardianship is
necessary; examines the guardianship procedure; looks at standby guardians; and provided a
number of illustrative family scenarios taken from actual events that were brought to
AHRC's Adult Sibling Support Group over the years.
to top
|
For further
information on services and events , call Annette Spallino, Sibling Services Manager, at 212-780-2592. |
|
|
|
|

Click on the highlighted text
Resources-Other
WebSites to go to the Family and Sibling Resources
section provided on the AHRC Web Site. If you would like more
information on discussion groups and listservs, please
click
here for a sibling support website.
to top
|
|
|
Home
| About Us |
Membership | News
| How to Help | Art Gallery
© 1996-2008 AHRC New York City. All
Rights Reserved.
Privacy Statement |
|