Webster Bank in Derby to present demo this morning of therapeutic bikes

 

Proceeds from bike night at Valley Diner in Derby to benefit teen

Buy a shamrock, help people who are living with a muscle disease

#MDAShamrocks season is here! 

When you donate, you are helping fund research so kids and adults with MD, ALS, and related illnesses can live longer and grow stronger!

*Note: This annual fundraiser hits home for me and my husband Ralph. 
He is living with a form of Muscular Dystrophy and has used a wheelchair for more than 20 years.   

Newsletter: Seymour man pens accessibility guide, 'Flip' benefits BHcare

Dear readers,

Our latest Valley Voice newsletter features a Seymour resident's accessibility guide, BHcare's Flea Market Flip at the Ansonia Armory, and more.

Thanks for reading,

Patti

Recuperation journey: Pet peeve, third edition

I really don't want to keep writing about pet peeves but on Saturday a driver angered me again. 
And I think what happened is worth sharing to raise awareness.

My husband, Ralph, drives a wheelchair accessible van, as regular readers of our newsletter no doubt know. 

He received a lovely note on his windshield Saturday because he took up two spaces in the East Main Street parking lot in Ansonia. It was so lovely that the writer felt the need to use the F Bomb to make his or her lovely point. 

OK, sometimes when the parking is tight, or there are no handicapped spaces, Ralph needs to take up two spaces to drop the lift so he can exit the van.
I'd like to ask our friendly note writer how he or she would feel if someone they cared about needed to drive or be driven in a wheelchair van and someone was extremely rude to them. 

This isn't the first time we've gotten a lovely note from a friendly driver. For some reason the F Bomb is always included. Interesting.

I know we're not the only family that deals with this nonsense. 
Earlier this year a mom with a daughter who uses a wheelchair posted on an Ansonia Facebook page that someone constantly parked in the handicapped parking space at the Joel E. Smilow Clubhouse on Howard Avenue. 
That person did not have a handicapped permit and his or her rudeness routinely made the mom's life and that of her daughter much more difficult.

By the way, my husband is chairman of the Ansonia Cultural Commission and was one of the main organizers of Saturday's Ansonia Harvest Festival. 
He got the note after 11 hours of volunteering on Main Street during the fabulous fest.

Our family agrees anger only drains our energy and we should feel sorry for ignorant people who go through life being rude toward others.

Recuperation journey: Spreading awareness of 2 disorders

I decided to post the above chart that delineates between Muscular Dystrophy and Multiple Sclerosis because my husband Ralph suffers from a form of MD, Limb Girdle. 
And there are more than 30 kinds of Limb Girdle. 

Often when people meet Ralph they mistakenly think he has Multiple Sclerosis. 
I hope this chart helps to raise awareness of both of these disorders.

Recuperation journey: Fingers crossed

I'm crossing my fingers that the hand controls that my husband Ralph is getting installed in his van today will make life behind the wheel much better for him. 
The controls he has been using are not as convenient for him as they once were.

The next step will be getting the van set up so he can drive from his brand new wheelchair. Unfortunately it's idling in our spare bedroom because adjustments need to be made for him to use it.

So, fingers and toes crossed today.

Recuperation journey: Happy, happy, joy, joy

My husband Ralph and I found out this morning his new wheelchair is arriving Monday, along with a technician who will finish assembling it, and make sure it fits Ralph or Ralph fits it. 

Not sure how that goes.


The new chair should make his life so much easier. I'm happy for him that it's almost here.

The antique wheelchair pictured probably isn't all that comfortable, but I do like the umbrella for the summer, or for rainy days.

And that desk would be perfect for Ralph's laptop. He could work as he goes! 



This is what he's getting. -->

Newsletter: Memories of popular Seymour teen, living with disability, more

Dear readers, 

Today's Valley Voice newsletter features a cheerleading competition at Seymour Middle School in memory of Nina Poeta, living with a disability, more.

Thanks for reading!

~ Patti and Ralph

Recuperation journey: Winter, wheelchairs bad combination

My husband Ralph uses a wheelchair and he finally got out the other day. 
Hallelujah! 

He got his hair cut and got some fresh air.
Ralph was basically a shut-in for eight days straight thanks to the snow and ice.

And now there is snow in the forecast for Tuesday into Wednesday.
He'll have to make the best of it as he works on our newsletter and talks to the cat.

Saturday is Limb-Girdle Muscular Dystrophy Awareness Day

I'm sharing because Saturday is a meaningful day for me and my husband, Ralph, since he suffers from this debilitating disease. 

Although it's hereditary he is the only one of seven siblings to be afflicted. 
Thankfully Ralph's five sisters and one brother escaped it.  

Over the years people have asked why Ralph needs to use a wheelchair. Many assume he was in an accident. 
But no, the truth is he has a progressive disease that brings with it a whole different, unique way of life.

Raising awareness is always a good thing to do.

Surgery will be a blessing, but not without its challenges

Hi readers,

This week it was husband Ralph's turn to write about my upcoming kidney transplant.

He's disabled and needs a lot of assistance, which I won't be able to give him for a while as I recuperate. 
You can read all about it in our latest Valley Voice newsletter here.

I wrote a story about an interesting talk Sunday at the Seymour Historical Society that focused on ancient graveyards.

Thanks for reading,

Patti

Abbreviations for assisting disabled explained

Since we are one of many families in Connecticut facing the daily challenges posed by a disability, I thought I'd share this list from My Place CT. 

I would have never known the meaning of most of these abbreviations that are used for long-term care supports and services:

AAA        Area Agency on Aging
AASCC    Agency on Aging South Central CT (AAA – South Central CT)
ABI         Acquired Brain Injury
ac          Before Meals (used with medication dosages)
ACH       Acute Care Hospital
ADRC     Aging & Disability Resource Center (aka Community Choices)
ADRC     Alcohol & Drug Rehabilitation Center (Greater Hartford)
ADA       American Dietary Association
ADA       American Dental Association
ADA       Americans with Disabilities Act
ADC       Adult Day Care
AL         Assisted Living
ALSA     Assisted Living Service Agency
ACU      Alternate Care Unit
aka       Also known as
AU        Assistance Unit
BESB     Board of Education and Services for the Blind
bid       Twice a day (used with medication dosages)
BH        Boarding Home
BIACT   Brain Injury Association of CT
BUP      Back-up Plan
c With –  (may have accent grave) - (used with medication dosages)
C4A CT    Association of Area Agencies on Aging
CAADC    Connecticut Association of Adult Day Centers
CAHCF    Connecticut Association of Health Care Facilities, Inc
CAHCH CT  Association for HealthCare at Home
CANPFA   This is Now Leading Age - Formerly: Connecticut Association of Not-For- Profit Providers For The Aging Inc
CACIL CT    Association of Centers for Independent Living
CARF CT     Association of Residential Facilities
CARSC CT   Association for Resident Service Coordinators
CBS            Community Based Services
CB-LTSS     Community Based - Long Term Supports and Services
CCAR         Connecticut Community for Addiction Recovery
CCNH         Chronic and Convalescent Nursing Home (Nursing Home)
CCCI CT      Community Care, Inc. (Access agency). 4 offices: 
Main-Bristol (-M); Eastern-Norwich (-E); Western-Watertown (-NW); NorthCentral-Wethersfield (-NC)
CCCI          Colonial Cooperative Care, Inc. (Does disability determinations for DSS)
CDH          Chronic Disease Hospital (e.g. - Hospital for Special Care)
CDHI         Community First Choice
CDR          Center for Disability Rights (CIL - south Central CT)
CDSMP      Chronic disease Self-Management Program
CFC          Community First Choice
CHOICES
CT's programs for Health insurance assistance, Outreach, Information and referral, Counseling and eligibility Screening
CHSP       Congregate Housing Services Program
CIL          Center for Independent Living (formerly known as ILC)
CIL          Corporation for Independent Living (Does home modifications over Tier 1 costs)
CLS          Community Living Specialist
CO           Central Office
COE         Conservator of Estate
Comp       Comprehensive   (DDS Waiver)
COP         Conservator of Person
COP/E      Conservator of Person and Estate
CM           Care Manager (Care Planers of Elder Waiver)
CSA          Common Standard Assessment
CSR          Continued Stay Review
CSRCP CT  Statewide Respite Care Program (aka Alzheimer's Respite Program)
CT HCPE CT  Home Care Program for Elders
CTH          Community Training Home
D/C          Discharge
DCP          Discharge Care Planner
DDS          Department of Developmental Services
DEMHS      Department of Emergency Management & Homeland Security
DMHAS      Department of Mental Health and Addiction Services
DME          Durable Medical Equipment
DNEC        Disabilities Network of Eastern CT (CIL – Eastern CT)
DPH          Department of Public Health
DRCFC      Disability Resource Center of Fairfield County (CIL – Southwestern CT)
DSS           Department of Social Services
EBUP        Emergency Back-Up Plan
EMS          Eligibility Management System
ECU          Environmental Control Unit
FS             Food Stamps (Replaced by SNAP)
FSW          Family Services Woodfield (has Housing Coordinator located in Bridgeport)
gt Drop     (used with medication dosages)
HC            Housing Coordinator
HCBS        Home and Community Based Services
HERC        Housing Education Resource Center (Has Housing Coordinator located in Hartford)
hs (at)      Hour of Sleep (Bedtime) (used with medication dosages)
HUD         Housing and Urban Development
ICF-          MR Intermediate Care Facility – Mental Retardation
iC             Interchange
IC             Informed Consent
ILC           Independent Living Center
IN             Independence Northwest (CIL – North Western CT)
IMD           Institute for Mental Disease
IFS            Individual and Family Supports (DDS Waiver)
IU             Independence Unlimited (CIL – North Central CT)
LRE           Least Restrictive Environment
LOC           Level of Care
LON           Level of Need
LTA           Long Term Approval
LTSS          Long Term Supports and Services
MAA          Minimal Assessment Application
MDS          Minimum Data Set
MFP          Money Follows the Person
MH           Mental health
MOW        Meals on Wheels
MS           Multiple Sclerosis
NEMT       Non-Emergency Medical Transportation
NF           Nursing facility
NFCSP      National Family Caregiver Support Program
NCAAA     North Central Area Agency on Aging (AAA – North Central CT)
npo          Nothing by mouth (may be seen with medical test orders)
NWD        No Wrong Door
od Right Eye  (used with medication dosages)
OPM        Office of Policy & Management
OPA        Office of Protection & Advocacy for Persons with Disabilities (P&A)
PASRR     Preadmission Screening and Resident Review
P&A        Protection & Advocacy
pc           After Meals (used with medication dosages)
PCA         Personal care Assistant
po By Mouth  (used with medication dosages)
POA         Power of attorney
POC         Plan of Care
PRN         As needed (used with medications, therapies, treatments, etc.)
os Left Eye    (used with medication dosages)
PSE          Protective Services for the Elderly
qid           Four Times a Day (used with medication dosages)
RAP          Rental Assistance Program
RCP          Resident Care Plan
RCH          Residential Care Home (aka Rest Home or Board & Care Home)
RHNS        Rest Home with Nursing Supports (Nursing Home
RSC          Resident Service Coordinator
RTA          Request for Tenancy Approval
q3h          Every 3 hours (used with medication dosages)
qd Daily (used with medication dosages)
S8 Section 8
SCM        Specialized Care Manager
SCMS      Specialized Care Manager Supervisor
SDG        Security Deposit Guarantee
SCI         Spinal Cord Injury
SME        Specialized Medical Equipment
SSA         Social Security Administration
SSDI        Social Security Disability Insurance
SSI          Supplemental Security Income
SNAP       Supplemental Nutrition Assistance Program (formerly known as Food Stamps)
SNF         Skilled Nursing Facility
SR           Senior Resources (AAA – Eastern CT)
ST           Short Term
SW          Social Worker
SWCAA    South Western CT Agency on Aging (AAA – Southwestern CT)
T-18       Medicare
T-19       Medicaid
TA         Technical Assistance
TEFT     (A Demonstration Grant for) Testing Experience and Functional Tools
tid          Three times a day (used with medication dosages)
TBI         Traumatic Brain Injury
TC          Transition Coordinator
TPL         Third Party Liability
USDA       United States Department of Agriculture (does housing and SNAP in rural areas)
WCAAA    Western CT Area Agency on Aging (AAA – North Western CT)
WISE       Working for Integration, Support and Empowerment (MH Waiver)
WRAP      Wellness Recovery Action Plan
_

I hope you find this helpful! 

Disabled protest lack of access at Seymour Post Office

Members of Center for Disability Rights travel to Valley for rally

Center for Disability Rights members Sandra Roberts, left, and Dana Canevari, both of New Haven, show support at Wednesday's rally outside the Seymour Post Office.

CDR Executive Director Marc Anthony Gallucci, center, speaks to members Dana Canevari, left, and Irene Puccino at the start of Wednesday's rally.

East Haven resident Irene Puccino, president, CDR Board of Directors, holds a sign to show her support at the demonstration.

Mike Nugent of East Haven holds a sign demanding 'first class service.'

Orange resident Charles Smythe, past president of the CDR Board of Directors, waits to mail a package.

Full disclosure: I'm a member of the Center for Disability Rights along with my husband, Ralph.

Please click here to read my story posted today in the Valley Independent Sentinel.

Motivational speaker to address Center for Disability Rights in West Haven

A man who defied all odds to participate in and complete the New York City Marathon in 2009 will be the featured speaker Thursday at a meeting of the Center for Disability Rights.

The West Haven-based nonprofit will welcome John Tartaglio to its membership meeting at 6 p.m. at Savin Rock Conference Center, 5 Rock St., West Haven. 

In 2004 at the age of 17 Tartaglio lost both legs and a bicep to a rare bacterial infection. He went on to graduate cum laude from Fairfield University and earn a Masters in Business Administration from the University of Connecticut.

Tartaglio will share his inspiring life story with members and friends of the Center for Disability Rights.

The Valley is a part of the nonprofit organization's catchment area. The public is invited and encouraged to attend.

Note: CDR members in good standing who stay for the entire event will receive a copy of Tartaglio’s book. He will have books for sale for non-members, the general public, and members who would like to purchase additional copies.