Spinal cord injuries - Quadriplegia and Paraplegia

Spinal cord injuries Quadriplegia and Paraplegia
After a disability occurs, each person’s abilities, motivation, personal care needs,
and self-image vary immensely. We will discuss personal experience with spinal
cord injuries, personal care issues, care giver issues, quality assurance,
encouraging independence, and resources.
“It’s important to honor the worth and dignity of
each and every person.”
~ Patty Goss, Advocate
Adjusting to and understanding that my child has a disability
WELCOME TO HOLLAND
By Emily Perl Kingsley. c1987
WELCOME TO HOLLAND
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I am often asked to describe the experience of raising a child with a disability - to try to help people who have not
shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide
books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may
learn some handy phrases in Italian. It's all very exciting.
WELCOME TO HOLLAND
CONTINUED
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After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later,
the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life
I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
WELCOME TO HOLLAND
CONTINUED
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The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine
and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a
whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while
and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland
has tulips. Holland even has Rembrandts.
WELCOME TO HOLLAND
CONTINUED
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But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful
time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what
I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant
loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very
special, the very lovely things ... about Holland.
Adjusting to and understanding that my child has a disability
• Information and Education
• Learning to advocate
Challenges
Being the primary caregiver
Challenges
CONTINUED
• Health Issues
– Durable Medical equipment
– Medication
– Therapy
– Medical Emergencies
Challenges
CONTINUED
• Transitioning to adulthood and Independence
– Training others to care for her needs
– Trust and letting go
TRACY’S Adventures
Visiting an Amish Farm
TRACY
Making new friends
TRACY
Swimming
TRACY
Training horses
TRACY
Graduation
A quadriplegic’s perspective
Adjusting to Spinal cord injury
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A new reality
Husband and father
Self-image
What now?
Becoming Independent (4 C’s)
• Choice
• Creativity
Becoming Independent (4 C’s)
• Control
• Confidence
Case manager’s perspective
• Learn and understand
• Educate about opportunities
• Become a cheer leader
When did the disability occur?
• Lifelong disability?
• New injury?
• 3-5 years
Approaches to
Encouragement/Motivation
• Physical
• Cognitive
• Emotional/Spiritual
In-Home services/CDS versus
Nursing Home care
Nursing Homes
• Standard Care (if even that)
• Privacy Issues
• Out of touch with society
Helpful tips
• Accurate Documentation-Create a Care folder
– Personalized care plan
– Medications and allergies
– Emergency protocols
– Personal activities
– Goals
Helpful tips
• Accurate Observations
– Onset of health crisis
– Medical equipment
Helpful tips
• Reporting - Communicating
– Notification to family members
– Dr and Nurse notes
– Timesheets
– Emergency protocol
Application of experiences to HCBS versus Nursing Home
• Schedules
– Need to know clients/consumers
– Need to know background of aides
reliable/trustworthy/good communication
Application of experiences to HCBS versus Nursing Home
• Quality Assurance
– Face to face vs phone communication
– Open door policy
– Accurate documentation
Application of experiences to HCBS versus Nursing Home
• Information and Referral
– Assistive technology
– Counseling
– Socialization
– Integration in the community, VR
Stories That Matter
• A couple just recently joined our Social Club,
her husband is disabled and currently resides
in a nursing home, the wife lives close by in
their home. They are able to attend activities
together with the assistance of our
transportation and organized outings! They
are very thankful that we are here!
Stories That Matter
• A woman with a disability came into the
office to inquire about our services here at the
Center, while talking with her she explained
that she has lived here for a year and had no
friends, or anyone that she could relate to.
After attending our craft group, she said she
has not been happy in a long time and she felt
so blessed and accepted.
Stories That Matter
~Spinal Chord Injuries~
Loretta McRae
http://www.spinalcordrecovery.org
Stories That Matter
~Spinal Chord Injuries~
MacKenzie Clare
http://www.spinalcordrecovery.org
Stories That Matter
~Spinal Chord Injuries~
Lily Wilkinson
http://www.spinalcordrecovery.org
Personal Care
• Skin care and Wound care
Personal Care
continued
• Urinary and bowel care
Autonomic Dysrelexia
Our baby Seth 3-20-12
Personal Care
continued
• Equipment
Personal Care
continued
• Muscle spasms
Resources and Assistive technology
• Center’s for Independent Living (CIL)
4 core services
– Advocacy
– Independent Living Skills training
– Information and Referral
– Peer Support
Resources and Assistive technology
continued
• Division of Vocational Rehabilitation
– Education
– Supplies
– Vehicle modifications
WRAP UP
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SPINAL CORD INJURIES
PERSONAL CARE
SETTING GOALS
INDEPENDENCE
QUALITY ASSURANCE
RESOURCES
QUESTIONS
Email contact:
Janet Stafford [email protected]
Tony Miller [email protected]
THANK YOU
• ENJOY YOUR CONFERENCE