| July
/ August 2005 |
Inside This Issue.... From The Editor......................................................................
2 |
SAVE
THE DATE!!! DSAGNO BUDDY WALK SUNDAY, OCTOBER 16, 2005 NEW LOCATION, NEW FACES.. .................. DSAGNO Announces New Buddy Walk Chairs, New Location This year there will
be some new faces and a new atmosphere for Buddy Walk 2005. DSAGNO’s
Board recently announced that, Lynn Cannon, Kate Kenny and Donna Reno
will co-chair Buddy Walk 2005. Last year’s chairs, Marian Vigo and
Pat Ehrle will continue on the BW05 committee making significant contributions.
Everyone at DSAGNO is grateful for the wonderful job they did last year
and the Board is very glad that they will continue to be very active participants
in this year’s BW preparations. |
| Page 2 From The Editor |
This
issue wasn’t easy to work on. Sexuality is an issue far far away
for our family, I hope... It’s scary to think of our children that
way. They will always be our babies. But the babies that we advocate for
today are the adults of tomorrow. And do we really want to advocate for
them to be adults in every way, but stop dead in our tracks when it comes
to relationships or protecting themselves?
Believe me, as new as the subject of sexuality and people with disabilities is to us, it’s new to the experts too. It never occurred to me until I took the session on Sexuality Across the Lifespan at the NDSS conference that the experts really don’t have a lot of information about relationships between people with cognitive disabilities. But, they are beginning to see things change. People with cognitive disabilities, think and feel exactly like everyone else. They seek love, companionship, warmth and intimacy. Around the country today as more people are included and not isolated in institutional settings, experts are finding that people with Down syndrome and other cognitive disabilities are beginning to marry, form relationships and experience all the joys, and the frustrations of a committed intimate relationship...and they are succeeding! Yes, they do need supports in both living assistance and in dealing with their relationships, but who among us hasn’t reached out to a friend or even a counselor when your “life partner” was driving you crazy?! ? As people with cognitive disabilities are more and more included in society, their opportunities for these relationships will increase, as it should, and we will begin to see them flourish with inclusion in relationships as well as other aspects of everyday life. So Moms and Dads, we need to be prepared to have some frank discussions, do a little research, find some information our children can understand so we can give them the support they need in their relationships just as any other support we would give them. And we need to begin to recognize them as the future adults they will be.... Karen Scallan |
| Page 3 Mark Your Calenders |
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August 2. Autism: Are you prepared for a crisis?
For Parents and Care Providers. Presenter: Dennis Debbaudt, the father
of young man with autism. He wrote the ground-breaking booklet “Avoiding
Unfortunate Situations,” the first look at the interactions between
children and adults with autism and law enforcement professionals. He
presents to law enforcement agencies in the United States, Canada and
United Kingdom. Questions to be considered: Do you have a plan in place
in case of a crisis? Do you have a 911 red flag? Have you alerted your
neighbors? Do you know that drowning is the leading cause of death for
a child with Autism? TWO SESSIONS: 9:00am-12 Noon AND 1:00pm-4pm. Nicholls
State University, Ballroom, Thibodaux, LA. Free. FREE. For more info/RSVP:
Brandy or Donna, 985-879-2001 or 1-800-331-5570
August 3. Basic Rights. Educational workshop explaining basic rights for children with disabilities. 9:30 am till 11:30 am. St Mary Parish Library, 206 Iberia Street, Franklin, LA. FREE. For more info/RSVP: Madeline 1-800-331-5570. August 4.
Basic Rights. See August 3. 9:30 am till 11:30 am. St James Parish
Library, 1879 W. Main Street, Lutcher, LA. FREE. For more info/RSVP: Madeline
1-800-331-5570. August 11.
How to Write an Efective Behavior Intervention Plan. Does your
child’s behavior effect school? Learn how to identify behavior problems
and what it takes to make a behavior plan effective. 5:30pm-7:30pm. East
N.O. Regional Library, 5614 Read Blvd., New Orleans, LA. FREE. For more
info/registration: FHFGNO 504-888-9111 August 16. Understanding the Individualized Evaluation. Learn what you need to know to fully understand your child’s evaluation. 6:00pm-8:00pm. New Orleans East Regional Library, 5641 Read Road, New Orleans, LA For more info/registration: FREE. FHFGNO 504-888-9111. August 17. Individual Transition Planning. How the Individual Transition Plan (ITP) process works, how to get what your child needs and parental rights in the ITP. 6:00pm-8:00pm. FREE. Belle Chasse Library, 8442 Highway 23, Belle Chasse LA. For more info/registration: FHFGNO 504-888-9111 |
August 18. How to Write an Effective Behavior
Intervention Plan? See August 11. 11:30am-1:30pm. FREE. Belle
Chasse Library, 8442 Hwy 23, Belle Chasse, LA. For more info/registration:
FHFGNO 504-888-9111.
August 23. Fair Housing Rights. What do you do when you need changes in your apartment or home. Who decides what you need and how? Who does the work and how is it going to be paid? Answers questions and discusses rights and issues of fair housing. Presenter: Sharon Hennessey, LSU-HDC Laurie Arceneaux Debra Scott, 6:00pm-8:00pm. FREE. Old Metairie Library, 2350 Metairie Road, Metairie, LA. For more info/registration: FHFGNO 504-888-9111. August 24. Affordable Rural Home Ownership Opportunity for Persons with Disabilities. Home Ownership Information by Sean LeBlanc, Area Director U.S. Department of Agriculture, Rural Development. For people with disabilities, caseworkers, parents of people with disabilities, staff of non-profits serving people with disabilities. 10:30am-12:00noon. FREE. Ascension Parish Library, 708 South Irma Boulevard, Gonzales LA. For more information/registration: 1-800-960-7705. August 26. 7th Annual Golf Tournament. Bayou Land Families Helping Families. 7:00am. Sugarland Country Club, Raceland LA. For registration form, fees, flyer: 1-800-331-5570. September 7. Assistive Technology What Purpose Does It Serve? Learn what assistive technology is all about and how to get it identified in your child's IEP. Presenters: Laura S. Nata Meher Banajee, Assistive Technology Regional Coordinator. 10:00am–12:00noon. FREE. St. Bernard Library, 1125 E. St. Bernard Hwy., Chalmette, LA. For more info/registration: FHFGNO 504-888-9111. September 21. One Stop Center. Tour the One Stop Center. Learn how their services can help you improve your job skills; write resumes and locate a job. 10:30am-12:00noon. Connection One Stop, 1900 Lafayette Street, Gretna LA. FREE. For more info/registration: FHFGNO 504-888-9111. September 24. Record Keeping. Learn about tips to organize school records, medical records, and important papers for yourself and family. 10:00a.m. - 12:00 p.m. FREE. 4323 Division Street, Suite # 108 Metairie, LA. For more info/registration: FHFGNO 504-888-9111. October 19. Changing the Vision. Bayouland FHF 10th Annual Conference. Raymond Jetson, Deputy Secretary for the Department of Health and Hospitals is the keynote speaker. A conference booklet and registration. There will be several concurrent sessions with many different presenters with a variety of topics. 8:00am-3:15pm. FREE FOR FAMILIES. Professionals-$55.00 before October 12. $65.00 after October 13. Houma-Terrebonne Civic Center, Civic Center Blvd, Houma LA. For more info/registration form: 1-800-331-5570. |
| Page
4 Sexuality and People with Cognitive Disabilities |
The
thought of our little angels as sexual beings is unnerving and if our
angel happens to have a disability, the subject of sexuality conjures
all kinds of worries. But as evidenced by the packed house 2 years in
a row at NDSS’s session on Sexuality Across The Life Span, I’d
say it’s a subject we’re all concerned about when it comes
to our kids. LeslieWalker-Hirsch, Med, FAAMR, who conducted the Sexuality Across the Life Span session, began by discussion origins and influences on sexuality of adults. Leslie stated that sexuality is expressed differently at different ages, and that some elements of sexuality have been determiend before birth. Influences after birth include our parents and families. Some people believe even frequent surgeries, physical therapty, etc can have an impact on a person’s sexuality, autonomy and ability to recognize boundaries. How affection or anger is displayed or how modesty is handled in a familiy also influences sexuality in adulthood. As children attend school, peer behavior models and formation of friendships can affect sexuality. Inclusive settings provide same-age peers, good models for language, dress and socialization. And, just when you think you’ve got things rolling along and everyone’s happy, puberty sets in. Leslie believes that puberty is starting earlier and earlier which presents additional problems for children with disabilities who may not be maturing socially or intellectually as fast as their bodies. Children need to be prepared for the changes that will occur in their bodies and they need to know it’s okay to talk to their parents about those changes. Since during puberty, feelings are much more intense and inconsistent due to hormonal flucuations. Children will also need greater social skills to handle embarrasing body changes. Your child’s relationships during puberty will change also as will friendships that they had from elementary school due to change in interests. Other children may have more independence than you’re willing to give your child. Children at this stage have much more difficulty with feeling different. Peer friendships your child had may now be converted to “helping” friendships and disability prejudice may develop. Leslie emphasizes that it’s extremely important for children to have friends with similar views. She says that some times parents of children with disabilities overvalue “typical” friendships and under value “special needs” friendships. It is important for kids with disabilities to be in both worlds. We all choose friends that are like us, who have similar views ...that should be the same for kids with disabilities. The Down Syndrome Association of Greater Cinncinnati conducted a focus group recently and asked each adult with Down syndrome if they were interested in dating, relationships or getting married. Without exception, all stated they were. Further evidence that it’s on their minds and we need to talk to them. Leslie Walker-Hirsch indicated there are some instances of romance between a person with a disability and a person with no disabilities; however, she cautioned that any such relationship would have a dangerous imbalance of power. She stated that the most likely source for a romantic relationship is with a peer who has a like disability, therefore, it is important that your child with a disability be afforded many opportunities to meet peers with disabilities as well as |
typical peers. Many times, once
high school ends, socialization ends for a person with a disability,
but new friendships and romances can develop when supports are in place
to facilitate social relationships. 10.
People with Down syndrome need the same Tips on What Parents Can Do: Start with giving
your child small decisions in little every-day things and give them
support so that they develop decision-making skills. Show them ways
to look for alternatives in every-day problems to get them used to looking
for resources. Put puberty education in your child’s IEP, include
decision-making skills, friendships. Ask your child while watching television,
“Why do you think that girl was crying when she saw the man kissing
someone else?” Show your child how to set boundaries and remember
boundaries may be very different from one part of the country to another.
|
| Page
5 Resources on Sexuality Issues |
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The following resources are just a few
listed in Disabilities Solutions 2 issues on sexuality which are also
included as resources below. For more resources, please visit the Disability
Solutions web site and review the seeries on sexuality and full list of
resources.
Sexuality Education: Building on a Foundation of Healthy Attitudes. Volume 4, Issues 5 and 6. Available free on line at http://www.disabilitysolutions.org/news.htm. Just Because I Am: A Child’s Book About Affirmation. Lauren Murphy Payne. Free Spirit Publishing, 1994. ISBN 0915793601. Encourages appreciation of uniqueness, includes empowering messages about the body, feelings, boundary awareness, touch and feeling safe. What’s the Big Secret: Talking About Sex with Girls and Boys by Marc Brown and Laurie Krasny Brown, Ed.D. Little Brown and Company Publishing. ISBN 0316101834. Easy to read story book addressing how boys and girls are different. Addresses societal rules related to talking, looking, touching and being touched and reproduction. Changes in You. Peggy Siegel. Family Life Education Associates publication. P.O. Box 7466 Richmond, VA 23221 (804) 262-0531. Written specifically for children with cognitive disabiltiies. Uses illustrations and straightforward language to explain the physical, emotional and social changes of puberty (Separate book for boys and girls). The Care and Keeping of You: A Body Book for Girls. Valorie Lee Schaefer. Published by American Girl, ISBN 1562476661. www.americangirlstore.com. Advice book addresses female puberty changes. What’s Happening to My Body: A Book for Boys. Lynda and Area Madaras. Nemarket Press. ISBN 1557044430. (Girl’s version: 1557044449). Sexuality: Your Sons and Daughters with Intellectual Disabilities. Karen MelbergSchwier and Dave Hingsburger. Brookes Publishing Company. ISBN 1557664285. Addresses sexual development issues across |
the life cycle. Helpful stories from parents and their
children. Many parts specifically to people with Down syndrome and their
families.
Shared Feelings: A Parents Guide to Sexuality Education fo Children, Adolescents, and Adults Who Have a Mental Handicap. Diane Maksym. Published by Robert Inst Kinsman, Inc. ISBN 092012918. Guide for parents of children with intellectual disabilties. Includes teaching social skills, talking about bodies and feelings, decisions, STDs and exploitation prevention. Personal stories from families. Can be ordered through the Roeher Institute at www.indie.ca/roeher/catalogue. I Openers: Parents Ask Questions About Sexuality and Children with Developmental Disabilities. David Hingsberger. Mariah Management. Call 1-800-856-5007. Common querstions answered by one of the most well known and respected individuals in the field of sexuality and disabiltiy. Stacking
the Deck: A Social Skills Game for Adults with Developmental Disabilites.
Richard M. Foxx and Martin J. McMorrow. www.researchpress.com. Card game
that creates real-life situations to practice and reinforce learning.
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| Page 6 |
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Great News
for Early Steps Parents!! Who says advocacy doesn’t
work?!! |
Blood Center Exceeds
their Goal: Over 70 People Donate Blood for David Michel
Over 70 people donated
blood for little David Michel at the blood drive held at Our Lady of Perpetual
Help last Sunday. Edith and big David want to thank everyone who attended
and donated blood. Representatives of the Blood Center told DSAGNO they'd
hoped to be able to get 60 actual donors after screening everyone but
wound up exceeding expectations when over 70 people were able to donate
last Sunday. Approximately 100 people tried to donate, but many were rejected
through the screening questions and tests which include testing for iron
levels in the blood to be sure the person donating isn't anemic. .................. DSAGNO Seeking
Donations, DSAGNO is growing
by leaps and bounds. With a successful advocacy effort launched across
the state, national recognition from NDSS and our first steps at branching
out begun, we need your continued support to keep the momentum going.
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| Page 7 |
From
My Side June was a very
special month because I got to go to the prom with my special friend,
Heather Hancock, in Oklahoma City. I arrived in Oklahoma City on Thursday
morning and, Heather’s dad, Mr. Bill picked me up from the airport
and we headed home. From there, we met Mrs. Lisa, Heather’s mom,
and Heather for lunch. Heather took me to her school where she introduced
me to all her friends and teachers at Westmore High School, WHS. Later
that night we went out to supper with Heather’s family. |
Just
for Us...Self-Advocate’s Calendar
August 9. Ticket to Work and Work Incentives. What happens to my SSI check if I go to work? How can I save money for a car if I can't have more that $2,000.00? What about by Medicaid card? What is Ticket to Work? For adults with disabilities, family members and the professionals. 9:00am-12:00noon. Terrebonne ARC, #1 McCord Road, Houma LA. FREE. For more info/RSVP: Jeannie 1-800-331-5570. August 17. Standing Up For Ourselves. 10:30 a.m. - 12:30 p.m. Eastbank Regional Library, 4747 West Napoleon Avenue, Metairie LA. FREE. For more info/registration: FHFGNO 504-888-9111 August 17. Individual Transition Planning. How the Individual Transition Plan (ITP) process works, how to get what your child needs and parental rights in the ITP. 6:00pm-8:00pm. FREE. Belle Chasse Library, 8442 Highway 23, Belle Chasse LA. For more info/registration: FHFGNO 504-888-9111 August 20. West Bank Self-Advocates. 11:00am-1:00pm. FREE. Westwego Library, 635 4th Street, Westwego, LA. For more info/registration: FHFGNO 504-888-9111 August 23. Fair Housing Rights. What do you do when you need changes in your apartment or home. Who decides what you need and how? Who does the work and how is it going to be paid? Answers questions and discusses rights and issues of fair housing. Presenter: Sharon Hennessey, LSU-HDC Laurie Arceneaux Debra Scott, 6:00pm-8:00pm. FREE. Old Metairie Library, 2350 Metairie Road, Metairie, LA. For more info/registration: FHFGNO 504-888-9111. August 24. Affordable Rural Home Ownership Opportunity for Persons with Disabilities. Home Ownership Information by Sean LeBlanc, Area Director U.S. Department of Agriculture, Rural Development. For people with disabilities, caseworkers, parents of people with disabilities, staff of non-profits serving people with disabilities. 10:30am-12:00noon. FREE. Ascension Parish Library, 708 South Irma Boulevard, Gonzales LA. For more information/registration: 1-800-960-7705. August 26. East Bank Self-Advocates. 11:00am-1:00pm. FHF of GNO, 4323 Division Street, Suite #108, Metairie, LA. For more info: FHFGNO 504-888-9111 September 3. East Bank Self-Advocates. 11:00am-1:00pm. Families Helping Families of GNO. 4323 Division Street, Suite 108, Metairie LA. FREE. For more info/registration: FHFGNO 504-888-9111 September 17. West Bank Self-Advocates. 11:00am-1:00pm. FREE. Westwego Library, 635 4th Street, Westwego LA. For more info/registration: FHFGNO 504-888-9111. September 21. Standing Up For Ourselves. 10:30 a.m. - 12:30 p.m. Eastbank Regional Library, 4747 West Napoleon Avenue, Metairie LA. FREE. For more info/registration: FHFGNO 504-888-9111. |
| Page 8 |
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Ticket to Work Program Allows People on SSI and SSDI Work and Continue to Receive Benefits The Social Security Administration began it’s employment and health care initiative “Ticket to Work” to assist 10 million people with disabilities who want to go to work. SSA hopes to increase choices and opportunities for emloyment, vocational rehabilitation and other services of people who receive disability benefits. A wide range of support services are offer such as career assessment, placement, training, transportation, and housing assistance through “Employment Networks.” Eligibile participants must be between 18 and 64 and currently receiving SSID or SSI. Participants can retain their health care coverage by extending Medicare. Participants are exempt from Continuing Disability Reviews by the Social Security Administration. To learn more about Ticket to Work, call the toll-free Ticket Hotline at (866) 968-7842 or visit the comprehensive Ticket to Work Web site at www.yourtickettowork.com. Additional information about Ticket to Work can be found at the Social Security Administration’s Work Site website for workers with disabilities at www.socialsecurity.gov/work. .................. National E-Newsletter for Self-Advocates The Riot! is a national e-newsletter for self-advocates from the Self-Advocate Leadership Network at the Human Services Research Institute (HSRI). The primary audience is self-advocates, but family members and advocates will find the articles provide information and a perspective that will be beneficial. If you haven't read The Riot! yet check it out. It's unlike any other newsletter you've read—fun, edgy, and it's free. Look it over, print out copies, and share it with your family and friends! The April 2005 issue
can be downloaded as follows:
|
MOSAIC
MEMORIES
By Mae Belle Maurin Hi everyone! My husband,
Chris, and I recently attended the 2nd annual International Mosaic Down
Syndrome Association Conference in Houston. Although it was hosted by
IMDSA, it was open to everyone affected by Down syndrome. As expected,
we met wonderful parents and their children affected by Down syndrome.
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| Page 9 |
LaCAN
Successful in Securing 100 Additional NOW Waiver Slots!!
The Legislative session
has ended and, although LaCAN’s goal was to secure 800 additional
New Opportunity Waiver (NOW) slots, they were successful in securing an
additional 100 slots in a year when money’s in very short supply
for the state. Congrats to all LaCAN advocates who now number over 1300
across the state! These 100 NOW waivers are critical to people with disabilities,
many of who are in nursing homes, but do not need all the services of
a nursing home and would prefer to use less services and be in their own
homes. |
DSAGNO
Featured in Upcoming Edition of “Update” NDSS’s Quarterly
Newsletter
DSAGNO will be receiving
national recognition when NDSS features the organization in their Affiliate
Spotlight in the upcoming edition of Update, NDSS’s quarterly newsletter.
.................. BIRTHDAYS |
| Page 10 |
| Strength
In Numbers...15th Anniversary of the Americans With Disabilities Act
July 26, 2005 marked the 15th Anniversary of the Americans With Disabilities Act and still so many people with disabilities feel isolated, unable to effect change and at a loss as to how to advocate for themselves and others like them. Wondering what one letter can do? A phone call? Consider the following census figures, then consider the strength there is in numbers. We can make a difference!!! 37.5 million -- Number of people age 5 and over in the civilian non-institutionalized population with at least one disability, representing 14 percent. These individuals fit at least one of the following descriptions: they are 5 years old or older and have a sensory, physical, mental or self-care disability; they are 16 years old or older and have difficulty going outside the home; or they are 16 to 64 years old and have an employment disability. 23.6 million -- The number of people age 5 or older with a condition limiting basic physical activities, such as walking, climbing stairs, reaching, lifting or carrying. This group accounts for 9.0 percent of the civilian non-institutionalized population age 5 or older. 13.5 million -- The number of people age 5 or older with a physical, mental or emotional condition causing difficulty in learning, remembering or concentrating. This group accounts for 5.1 percent of the civilian non-institutionalized population age 5 or older. 7 million -- Number
of people age 5 or older who have a physical, mental or emotional condition
causing difficulty in dressing, bathing or moving around inside the home.
This group accounts for 2.7 percent of the civilian non-institutionalized
population age 10.7 million -- Number of people age 16 or older who have a condition that makes it difficult to go outside the home to shop or visit a doctor. This group accounts for 4.9 percent of civilian non-institutionalized people who are of this age. 11.8 million -- Number of people ages 16 to 64 who have a condition that affects their ability to work at a job or business. They account for 6.4 percent of civilian non- institutionalized people in this age group. |
Home
Is Where the Heart Is
By Angela Newitt I cannot begin to
explain how overjoyed I am to hear about the new program Operation House
Call, which offers Louisiana’s medical residents and students a
glance into our world. This program specifically recruits residents and
students involved in pediatric or family medicine programs and exposes
them to the daily routine of parents who have a family member with special
needs living at home. I’m sure many of you would agree when I say
that it’s not everyday someone from the medical community volunteers
to join us in the comfort of our homes and in the company of our loved
ones. |
| Page 11 |
| Save
the Date..Bayouland FHF 10TH Annual Conference October 19, 2005 8:00am-3:15pm Houma-Terrebonne Civic Center FREE FOR FAMILIES Keynote speaker: Mr. Raymond Jetson, Deputy Secretary for the Department of Health and Hospitals. Conference booklet and registration available by callling 1-800-331-5570. There will be several concurrent sessions with many different presenters with a variety of topics. .................. Bayouland FHF Has Moved!!! Bayou Land Families Helping Families
has moved back to Thibodaux. They are now locaetd across from the Envie
Resturant on Hwy. 308. Their new address is: |
Social
Security Fact Sheets
(reprinted from LaCAN Update by Kay Marcel) A major issue being
discussed by the White House and Congress is the reform of Social Security.
Since Social Security is not only a retirement program, but one that is
of great importance to individuals with disabilities it is important that
individuals with disabilities and their families be informed about the
issues. |
| Page 12 Emergency Preparedness for People with Disabilities By Karen Scallan |
We
had our first hurricane “scare” of the season with Dennis,
and emergency preparedness is all the discussion on television news these
days. The stress and strain of even every-day emergencies can be lessened
considerably with some advanced planning. Special considerations do have
to be made for people with disabilities now and all through out the year
when preparing for emergency situations. In preparing for emergencies
try to think about situations from emergency rescue personnel perspective.
Will your child respond if called by a fire fighter? Police officer? Can
they hear well enough to know when they’re being called? See well
enough to be able to leave the home during a power outage? Have you practiced
exiting your home during a fire drill so your child knows exactly what
to do? Emergencies are scary enough for the typical child to go through
without the proper tools and information, think about the added difficulties
your children with a disability will face in the event of an emergency.
Being prepared reduces fear and panic during an emergency. Take a look at some of the tips below from the Ohio Legal Rights Service, an advocacy agency for people with disabilities, and revisit your emergency plan at home to include some of the suggestions made by experts: •Train an emergency back-up person: Even if you have nursing or home health aide services, train a relative or friend in how to care for your child. • Keep an emergency bag of supplies on hand at all times for unexpected trips to the ER and when the electricity goes out and you need to find everything in one place. A bag with backup supplies of all essential disability-related and medical equipment items should be kept. For those who use a wheelchair, families usually keep the supplies in a back pack that is attached to the chair so that the items are always with the person. Additional supplies should be kept in the car that normally transports the family member with a disability. • Create a medical history sheet detailing your child's medical history, medications, feeding instructions, medical alerts (seizures, behavioral issues, etc.), listing of physicians, emergency contacts, insurance/Medicaid information, etc. • Keep a daily journal. If you are in an emergency situation and hospital personnel want to know what your child's behavior and health has been like lately. • Post emergency numbers in your child's bedroom and on a place close to your phone. Include numbers for the fire department, poison control, local hospitals, doctors, dentists, family members, and neighbors. |
•
Register your life support equipment that has been prescribed by a physician.
Contact your utility company to register
the equipment with them. Many utility companies maintain a database of
individuals relying upon these machines so that, in the event of an outage,
attempts will be made to restore service to that customer as quickly as
possible. Please be aware, though, that registering your equipment does
not guarantee uninterrupted or expedited service. Some families choose
to purchase a standby generator. American Electric Power recommends that
you make sure the generator has a manual or automatic switch that disconnects
it from main power lines to prevent utility workers from being shocked.
If switches are not available, use the main switch on your service panel
to cut power. It is best to have a licensed electrician connect the generator
to your home. For small equipment, you can purchase an adapter that can
be used in a car lighter port. • Get to know your local emergency medical station. Contact the fire stations and paramedic units that would respond to an emergency at your house. Set up a meeting (preferably have them come to your house so they can see the set up of your child's room and the equipment that you use) with them and give them copies of your child's medical emergency sheet. Keep them up-to-date on any significant changes in your child's condition. • Ensure that your house number is prominently displayed. Perform regular check to oxygen tanks to make sure the tanks are full. •Establish an evacuation plan for your family and any caregivers (nurses, respite workers, etc.) that are regularly in your house. Especially in the case of a person who uses a wheelchair, be specific about how the person should be removed from the house in case of a fire. Ensure that all smoke detectors or in working order. Draw and display the evacuation plan in a prominent place and remember to regularly practice the plan. • Carry a cell phone. Cell phones can be a life saver if an emergency happens while in a car or when you are in a remote place without access to a phone. A cell phone is also helpful when your regular phone is out of service. • Contact the Local Emergency management office now. Many local emergency management offices maintain registers of people with disabilities. Registering your address with the local emergency management office as being and address with a child with a disability will link your address to the information necessary to inform emergency assistance personnel about your child’s disability and that extra assistance may be required. |
| Page 13 Doctors’ Bed Side Manners Fall Short in Delivering Down Syndrome Diagnoses |
The
January issue of Pediatrics featured a survey of new Moms which indicated
that physicians are overwhelmingly negative when they informing mothers
that her newborn has Down syndrome. Mothers that were surveyed said most
physicians had no information about the positive potential for babies
with Down syndrome and didn’t provide adequate information or explain
Down syndrome well. Nearly all Moms surveyed reported physicians “fell
very short of making the birth a positive experience.” This survey, done by Harvard Medical Student, Brian Skotko, was mailed to approximatley 3,000 parents of children with Down syndrome across the country. Of the 1,250 responses, almost 1,000 were from Moms who had no pre-natal tests done and got their child’s Do wn syndrome diagnosis after their babies were born. Many said they were advised to put their children up for adoption. Some of the worst experiences of Moms occurred with children born in the 1980s, but horror stories continuing to this day are evidenced in stories from mothers about doctors who called their babies "FLK" ("funny-looking kid") and of doctors that told their husbands they could have prevented this by aborting their children had they had pre-natal testing. Mothers in the study also explained what doctors could do to improve. Mothers with the best birth experiences had doctors who spoke postively of Down syndrome. Skotko compiled a list of things physicians should remember in communicating a diagnosis of Down syndrome to parents based on the information from the survey. He suggests: |
the
person communicating the diagnosis should be a physician; obstetricians,
neonatologists and pediatricians should coordinate their messages; the
diagnosis should be delivered as soon as a physician suspects the diagnosis,
but only after the mother is settled; parents should receive the news
together, in a private setting; the physician should first congratulate
the parents on the birth of their child and not forget to talk about the
positive aspects of Down syndrome; they should not begin the conversation
by saying, "I’m sorry." Health care professionals should
keep their personal opinions to themselves; mothers should be provided
with up-to-date printed materials -- at a minimum, a bibliography listing
the most current resources for new parents; and, parents should be put
in touch with other families who have children with Down syndrome. Skotko, who has a 24-year-old sister with Down syndrome and co-authored the award-winning book, "Common Threads: Celebrating Life with Down Syndrome" (Band of Angels Press). Editor’s Note: DSAGNO recently purchased NDSS’s program “Changing Lives.” This program was designed for NDSS affiliates to use in promoting positive information about Down syndrome to the medical community. Marian Vigo, DSAGNO Vice-President will be going through the materials and making recommendations for setting up the program here in New Orleans. Watch DSAGNO News and DSAGNO E-News for future details. |
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Websites... Online Training for Student
Notetakers Available LowTechMan National Catholic
Partnership on Disability The Parent
Side...Inclusion Humor Kids Together |
Creating Mentoring Opportunities for Youth
with Disabilities
This issue brief from NCSET addresses the need for expansion of mentoring opportunities for youth with disabilities. Specifically, the brief outlines some of the benefits of mentoring for youth; defines the issue of the need for expanded mentoring opportunities for youth with disabilities; and presents strategies for including youth with disabilities in mentoring programs. http://www.ncset.org/publications/viewdesc.asp?id=704 Products
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