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The definition of deaf-blindness is broad and incorporates individuals with a wide range and combination of hearing and vision loss. The causes and severity of this combined loss also ranges significantly, influencing various levels of cognition and overall access to the hearing-sighted world.  Here are a few resources for your clients and patients that suffer dual sensory loss.

• American Association of the Deaf-Blind (AADB)

http://www.aadb.org

The only national organization run for, by and of deaf-blind individuals. It is a social networking and advocacy organization that provides information, resources and linkages to deaf-blind people and interested parties across the country.

• CHARGE Syndrome Foundation

http://www.chargesyndrome.org/

The CHARGE Syndrome Foundation provides support to individuals with CHARGE syndrome and their families; gathers, develops, maintains and distributes information about CHARGE syndrome; and promotes awareness and research regarding its identification, causes and management.

• Helen Keller National Center (HKNC)

http://www.hknc.org/ (HKNC)

Helen Keller national Center is the national rehabilitation center for adults who are deaf-blind. HKNC provides residential rehabilitation services at their center in addition to outreach services nationally through a network of regional representatives.

• National Association for Parents of Children with Visual Impairments (NAPVI)

http://www.NAPVI.org

The National Association for Parents of Children with Visual Impairments (NAPVI) is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.

• National Consortium on Deaf-Blindness (NCDB)

http://www.nationaldb.org

The national federal Technical Assistance project established specifically for supporting the state projects who serve children and young adults who are deaf-blind between the ages of 0 – 21.

• National Family Association of Deaf-Blind (NFADB)

http://www.nfadb.org/

NFADB supports persons who are deaf-blind and their families. NFADB is a non-profit, volunteer-based family association and the largest network of families focusing on issues surrounding deaf-blindness.

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As a nurse consultant, I often have to research complex medical issues, treatments, and the related costs.  I also spend a great deal of my time educating my patients on complex medical issues and treatments.  When I find myself going back to the same resource over and over, I know it is a good one.  Here are my top resources for neuro related issues and surgery.  These resources cover brain injury, spinal cord injury and the related treatments both surgical and nonsurgical. If you have a favorite neurosurgery resource that you use, share it with me in the comments.  I am always interested in expanding my sources for information.

BRAIN INJURY

Founded in 1980, the Brain Injury Association of America (BIAA) is the leading national organization serving and representing individuals, families and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI).

http://www.biausa.org/

BACK & NECK PAIN

At SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

http://www.spineuniverse.com/

AMERICAN ASSOCIATION OF NEUROLOGICAL SURGEONS

The American Association of Neurological Surgeons (AANS) is the organization that speaks for all of neurosurgery. The AANS is dedicated to advancing the specialty of neurological surgery in order to promote the highest quality of patient care.

http://www.aans.org/

CONGRESS OF NEUROLOGICAL SURGEONS

The Congress of Neurological Surgeons serves to promote health by advancing neurosurgery worldwide through innovation and excellence in education. The Congress of Neurological Surgeons provides global leadership in neurosurgery by inspiring and facilitating scientific discovery and its translation into clinical practice. The Congress of Neurological Surgeons maintains the vitality of our profession through volunteer efforts of its members and the development of leadership in service to the public, to our colleagues in other disciplines, and to neurosurgeons throughout the world in all stages of their professional lives.

http://www.neurosurgeon.org/index.asp

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Previously I shared information about the U.S. Department of Transportation (DOT) having fined Delta Airlines $2 million for violating rules protecting air travelers with disabilities. It was the largest civil penalty ever assessed against an airline by DOT in a non-safety-related case.  An investigation showed many violations of the requirements to provide assistance getting on and off airplanes and to respond to, and keep a record of, disability-related complaints.

While these issues will hopefully be addressed, it pays to be pro-active if you are traveling by air and have special needs.  Here are a few links for information associated with special disabilities or needs:

Wheelchair bound travelers-This is a great article by Craig Kennedy of Accessibility Consulting which is especially useful for those in a wheelchair.

Amputee travelers-The Amputee Coalition of America has published this fact sheet for those with prostheses who travel.

Vision and Hearing Impaired travelers-Here is a Google Document from  DHHCAN on airline travel accommodations for the seeing or hearing impaired traveler.

While these issues will hopefully be addressed, it pays to be pro-active if you are traveling by air and are disabled. By knowing your rights and by making all reasonable efforts to make the extra preparations, air travel can be much more enjoyable.

Related articles

• Wheelchair Resources – The Disabled Travel Guide (1800wheelchair.com)
• Survey: Travelers with Hearing Impairment (travelswithpain.com)

In my roles as both a patient advocate working in case management and also as a legal nurse consultant, medications can play a big role.  Whether I am educating a patient about the potential side effects of a medication or researching warnings from the FDA, I frequent these medication related resources.  I hope you will find them useful in your research as well.  If you have other resources to add, please do so in the comments and I’ll upload them to the list.  Enjoy!

• Adverse reaction reports from the FDA
• Medwatch
  The FDA’s Medwatch department collects safety information and adverse event reports on drugs, dietary supplements and medical devices. Their safety information page contains links to safety alerts and recent label changes for potentially dangerous drugs. At the bottom of the page, three databases allow users to search for adverse event reports for vaccines, dietary and nutritional supplements, and medical devices.
• Medication Errors
  The FDA’s Center for Drug Evaluation and Research maintains a website on “medication error,” a health care professional’s inappropriate or erroneous prescription of a medication that causes harm to the patient. It includes a list of drug products often associated with medication errors.
• Other useful information from the FDA on drug safety
• Institute for Safe Medication Practices
• FDA MedWatch
• National Center For Patient Safety
• Agency for Healthcare Research and Quality
• Center for Improving Medication Management
• Consumers Advancing Patient Safety (CAPS)
• Health Grades-Drug Ratings
• Institute for Healthcare Improvement-Medication Systems
• P.U.L.S.E. (Persons United Limiting Substandards and Errors in Healthcare)
• Patient Advocate Foundation National Coordinating Council for Medication Error Reporting and Prevention Chart
• Drug interactions from Arizona Cert
• P450 Medication Drug Interactions
• Drug Induced Arrhythmias
• Antibiotics
• Smart Phone Accessible Data Base
• Drugs
• Medline Plus
• RxList
• WebMD
• FDA
• Medicine Net
• Pill Identification
• Drug Watch

News articles that might also be of interest…
In Hospital Deaths from Medical Errors at 195,000 per Year USA
Medication Errors Injure 1.5 Million People Annually (IOM-Nat’l Academies, July ’06)
Q: What Scares Doctors? A: Being the Patient (TIME.com, May 1, 2006)
When Doctors Say, “We’re Sorry”(TIME.com)
10 ways to avoid outrageous hospital overcharges (MSN Money)
AARP – Fatal Mistakes (November 2004)
Dangers of Mixing Medications
Eight herbal medications pose potential dangers in surgical patients – Discontinuation Before Surgery Needed
Talking to Your Doctor-Medical Tests
Washington Monthly – Malpractice Makes Perfect
Program Coaxes Hospitals to See Treatments Under Their Noses (NY Times, 12/25/04

Related articles

• 50 of the Best Sites with Information on Prescription Drugs (medicalinsurance.org)
• MedWatcher Keeps You Up-to-Date With Drug Safety Reports (medgadget.com)
• New iPhone app tracks drug safety (boston.com)

You all know how I love to share resources.  An attorney client I am working with has provided these links regarding elder care and nursing home issues.  Enjoy!

• Arkansas Advocates for Nursing Home Residents
  A nonprofit organization dedicated to protecting and improving the quality of care and life for Arkansas residents in long-term care facilities.
• Arkansas Office of Long Term Care
  The Office of Long Term Care conducts investigations of complaints in which abuse or neglect of residents, or misappropriation of resident property, is witnessed, suspected, or alleged in long-term care facilities. Complaint information is kept confidential.
• Arkansas Attorney General Abuse and Neglect Complaint
  One mission of the Arkansas Attorney General’s Office is to investigate and prosecute Medicaid provider fraud and incidences of patient abuse and neglect.
• LTCFocUS.Org
  Provides data on nursing home care in the US with a goal to allow researchers to trace relationships between state policies, local market forces and the quality of long-term care and enable policymakers to craft state and local guidelines that promote high-quality, cost-effective, equitable care for older Americans.
• Center for Medicaid and Medicare Services
  This is an excellent site hosted by the United States Center for Medicare and Medicaid Services (CMS). The “Nursing Home Compare” feature assists you in evaluating the quality of care at any nursing home that accepts Medicare payments.
• Medicare Rights Center
  Understanding Medicare is no simple task. The Medicare Rights Center works to ensure access to affordable health care for older adults and people with disabilities through counseling, educational programs and public policy initiatives.
• Center for Medicare Advocacy
  The Center for Medicare Advocacy, Inc. is a national non‑profit, non-partisan organization that provides education, advocacy, and legal assistance to help elders and people with disabilities obtain Medicare and necessary health care.
• National Consumer Voice for Quality Long-Term Care
  Formerly the National Citizens’ Coalition for Nursing Home Reform, NCCNHR is a national nonprofit organization of consumers and advocates who define and achieve quality for people with long-term care needs.
• AARP
  AARP is a national nonprofit organization that promotes and protects the rights of senior citizens.
• National Senior Citizens Law Center
  The National Senior Citizens Law Center advocates before the courts, Congress and federal agencies to promote the independence and well-being of low-income elderly and disabled Americans.
• National Nursing Home Watch List by State
  Nursing homes with recent survey violations or substantiated complaints for “actual harm” or immediate jeopardy.”
• How to Select a Nursing Home
  A reference and checklist for the potential nursing home resident and his or her family.
• Federal Nursing Home Regulations
  A listing of federal regulations that govern nursing homes.
• State Nursing Home Regulations by State
  A listing of state regulations that govern nursing homes.
• The Merck Manual of Geriatrics
  A resource for medical conditions affecting geriatric patients.
• American Medical Directors Association
  AMDA has published Clinical Practice Guidelines specifically for use in long-term care settings.

If you feel you may have a case involving a nursing home or elder care issue.  Consider Mr. O’Quinn; the provider of these resources.

An Arizona man who was left blind when he was hit by a local school teacher while on his motorcycle has filed a lawsuit against the school and town in which the accident happened. The teacher was en route to a training session when she failed to yield at an intersection and slammed into the plaintiff on his motorcycle. The suit said the district is liable for employee conduct and the town is liable for the “inherently unsafe” intersection. Read Article: Arizona Republic

As a Nurse Life Care Planner, when working on a plan for someone who has been blinded, there are numerous resources we can call upon to get the individual back to many, if not most, activities of daily living:

-Schools for the blind are excellent at teaching visually impaired patients how to operate in and out of the home

-Home modifications conducted by a professionally trained consultant that will survey the home environment to make modifications for safety, lighting to maximize remaining vision for those will low vision and other modifications specific to the individual’s capability and environment to increase independence in performing ADL’s

-A seeing eye dog may be beneficial and included in the patient’s Life Care Plan.

For Arkansas related resources see also Resources for the Visually Impaired and Blind

Related articles

• Assistive Technology Resources (vp-medical)
• Disability Resources (vp-medical)
• Blindness Gives Better Perception Of Touch (cbs42.com)
• Developing a ‘smart cane’ for the blind (gizmag.com)

October is Ergonomics Month!  Ergonomic solutions can provide relief of musculoskeltal disorders, which pose direct as well as indirect costs for employers.  According to a 2005 Bureau of Labor Statistics report, sprain and strain injuries accounted for more than 75% of MSD cases that caused missed work days.  Employer can tackle the musculoskeletal disorders that plague many workers by investing in appropriate seating, keyboards, computer , and monitor screen placement.  An investment in ergonomic products can protect employees from work-related repetitive stress.

Here are some ergonomic resources for you to consider:

• Ergo Pro
• Ergobilities by AliMed
• Ergoware
• Ergo-Items
• 888 Ergo Direct

Related articles

• Ergonomic Mechanical-Switch Keyboard? (ask.slashdot.org)
• Ask Engadget: best ergonomic Bluetooth keyboard? (engadget.com)
• Hand-Contoured Keyboards – The Truly Ergonomic Keyboard Makes Typing More Natural (GALLERY) (trendhunter.com)
• Truly Ergonomic claims to revolutionize typing (gizmag.com)
• Review of Ergonomic Computer Monitor Stands (brighthub.com)
• Bad Office Chairs: Crippling Workers in the European Union – Until Now. (prweb.com)

Listed below are some resources that might help you in caring for your elder loved one. Let me know if you have others you wish to share and I’ll update the post.

Arkansas Department of Human Services
Division of Aging and Adult Services
PO Box 1437, Slot S-530
Little Rock, AR 72203
501-382-2441
Director: Herb Sanderson
http://www.arkansas.gov/dhs/aging

Arkansas Geriatric Education Center
4301 W Markham Street, #798
Little Rock, AR 72205
501-257-5543
http://www.agec.org

AARP Arkansas State Office
1701 Centerview Drive, Suite 205
Little Rock, AR 72211
866-554-8379
http://www.aarp.org/states/ar/ar-about/a2004-01-26-ar-stateoffice.html

Arkansas Area Agencies on Aging:
AAA of Southeast Arkansas                                              www.asea.org
Age with Dignity – AAA of Southwest Arkansas      www.agewithdignity.com
AAA of Northwest Arkansas                                            www.aaanwar.org
CareLink – AAA of Central Arkansas                            www.care-link.org
East Arkansas AAA                                                               www.e4aonline.com
West Central Arkansas AAA                                             www.seniorspecialists.org
Western Arkansas AAA                                                     www.agingwest.org
White River AAA                                                                 www.wraaa.com

By searching this blog for “resources” (see the search box to the right and below the image) one will discover a wealth of information regarding resources for the disabled.  I have recently obtained additional resources from a social worker that are certainly worth sharing.  Most of these resources are national, but a few are specific to Central Arkansas.  Please feel free to comment with your additions to this list.

• Easter Seals Arkansas – www.ar.easterseals.com
• Easter Seals – www.easterseals.com
• Arkansas Waiver Association – www.arkansaswaiver,com
• Arkansas Governor’s Developmental Disabilities Council -  www.ddcouncil.org
• Arkansas Federation of Families for Children’s Mental Health – www.affcmh.org
• Arkansas Support Network – www.supports.org
• Arkansas Rehabilitation Services – www.arsinfo.org
• Arkansas Autism Resource and Outreach Center – www.aaroc.org
• Arkansas Down Syndrome Association – www.ardownsyndrome.org
• Arkansas School for the Blind – 501-296-1810
• Arkansas School for the Deaf  – 501-324-9506
• ACCESS Schools – www.accessschools.org
• American Diabetes Association – www.diabetes.org
• Aphasia, the National Aphasia Organization – www.aphasia.org
• Autism Association of Northeast Arkansas – www.aanea.org
• Autism Speaks – www.autismspeaks.org (local events/information www.walknowforautismspeaks.org/arkansas)
• Brain Injury Association of Arkansas – www.brainassociation.org
• Community Connections Autism Resource Center of Arkansas – www.communityconnectionsar.org
• Conway Asperger – a Support Group in Conway, Arkansas – www.conwayasperger.org
• Cystic Fibrosis Foundation -  www.cff.org/Chapters/arkansas
• Dyslexia Arkansas – www.dyslexia-teacher.com/Arkansas
• Disability Rights Center – www.arkdisabilityrights.org
• Eye Contact Arkansas blog – www.eyecontactar.org
• HEAR – Helping Educate about Autism Recovery – www.arkansasautism.org
• Learning Disabilities Association of Arkansas – www.ldarkansas.org
• Meetup Little Rock Autism Families – www.meetup.com/little-rock-autism-families
• Muscular Dystrophy Association, Central Arkansas Chapter – 501-227-7098
• National Autism Association Arkansas – www.arkansasnaa.org
• Partners for Inclusive Communities – www.uams.edu/partners
• PEACE, Parents Educating Arkansas about Children with Epilepsy – www.peaceinark.com
• Riley’s Warriors – www.rileyswarriors.org
• United Cerebral Palsy of Arkansas – www.ucpark.org

I have been working with a trust client lately to develop a life care plan for an autistic child.  These kinds of life care plans are made to determine if the trust will have enough funds to maintain the child through his or her life expectancy with the types of care and support services they require.

In working on this particular plan, I have had to research sources available to those with autism.  Many of these resources are available for others as well and I felt they would be a valuable edition to the resources listed within this blog.

Please note that some of this information may be outdated as not every link was double checked before posting.  If you find any information in error, please note by commenting below.

Summer Camps and Weekend Respite Camps

• Camp Aldersgate – www.campaldersgate.net 501-225-1444, week long overnight summer camp and weekend respite camps.  Camps designed for children and ages vary.
• Camp Mitchell- www.campmitchell.org 501-727-5451
• Camp Barnabus – www.campbarnabus.org 417-476-2565
• Camp Believe – www.centersforyouthandfamilies.org 501-666-6833, 10 week day camp, ages 6 to 12
• Little Rock Parks/ Recreation www.littlerock.org/parksrecreation/therapeuticrec/summerdaycamps.aspx 501-918-5359, 6 week day summer camp, ages 8 to 18
• ARC Performing Arts Camp – www.arcark.org 501-375-7770 –  week long overnight performing arts camp for adults, campers can choose if they would like to do theatrics, singing, music and set design, camp is held at the CA Vines Arkansas 4H Center in West Little Rock.
• A-Camp – Email at a.camp4kids@gmail.com – 6 week therapeutic day summer camp for children with autism spectrum disorders, ages include children who have completed kindergarten through fifth grade.  Camp is held at Camp Aldersgate.
• Camp Connect (Community Connections) – www.communityconnections.org – 501-329-5459, one week day camp for children with autism spectrums disorders, ages include children who have completed kindergarten to 15 years old.
• Easter Seals Outreach Basic Training Program – www.aroutreach.com – 501-221-8414 – educational day program utilizing the STAR curriculum for children with autism spectrum disorders, ages include children entering kindergarten through fourth grade.
• Geyer Springs First Baptist Church, Little Rock – 501-351-2232 – One week day camp – Membership is not required. For more information call Bekka Middleton at 501-351-2232.
• Therapeutic Recreation in Parks-T.R.I.P. – (Arkansas Federation of Families for Children’s Mental Health) – www.affcmh.org – 501-374-7218 – weekend respite trips to State parks for individuals ages 8 to adults.

Gyms

• YMCA Metropolitan Little Rock – www.ymcalr.org

Westside YMCA, 4701 Sam Peck Rd, Little Rock, 501-227-8343

G. W. Carver YMCA, 1116 W. Daisy L Gatson Bates, Little Rock, AR, 501-376-0458

Heflin YMCA, 6101 JFK Blvd, North Little Rock, 501-758-3170

• Little Rock Athletic Club – www.lrac.com – 501-225-3601, 4610 Sam Peck Road. Little Rock, AR 72223
• Bess Chisum Stephens Community Center – www.centersforyouthandfamily.org – 501-664-4268, 1200 South Cleveland Street, Little Rock, AR 72204
• Jim Dailey Fitness and Aquatic Center – www.littlerock.org/parksrecreation/warmememorial – 501-664-6976,  300 south Monroe Street, Little Rock, AR 72204
• Jacksonville Community Center – www.cityofjacksonville.net – 501-982-4171 – # 5Municipal Dr, Jacksonville, AR

Hippotherapy/Therapeutic Horseback Riding

• Hearts & Hooves – www.heartsandhooves.com – 501-834-8766– 2308 Kellogg Acres Rd, Sherwood, AR 72120
• Harmony & Hooves – 501-470-5185/501-563-5211 – 1300 Jimmy Lane, Benton, AR 72019
• Beyond Boundaries – www.beyondboundariesar.com – 501-259-8333 – 2195 Peyton Street Hwy 319, Ward, AR 72176

Sports

• Miracle League Baseball – www.miracleleaguear.com – 501-940-3405 – Little Rock, AR
• Special Olympics – www.specialolympicsarkansas.org – 501-771-0222
• EXCEL – 501-843-2677
• Top Soccer, Community Connections – www.communityconnecctionsar.org – 501-329-5459 -  Conway and Little Rock, AR
• RUFL Flag Football, , Community Connections – www.communityconnecctionsar.org – 501-329-5459 -  Little Rock, AR and a summer camp in Conway

Miscellaneous Activities

• New Beginner’s Dance for Adults, Easter Seals Arkansas Adult Outreach Center – 501-221-8445 –  monthly dance held on the third Friday of the month 
• I Can! Dance – Community Connections – www.communityconnecctionsar.org – 501-329-5459 -  Conway, Little Rock and  North Little Rock, AR
• ACTS Jr. – Community Connections – www.communityconnecctionsar.org – 501-329-5459 -  Conway and Russellville, AR
• Parents Night Out – Geyer Springs First Baptist Church, Little Rock – 501-351-2232 – Parents night out is held on the second Friday of the month from 6pm to 8pm- Membership is not required. For more information or to RSVP, call Bekka Middleton at 501-351-2232.

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