Advocacy Series: Exploring Your Inner Advocate

You don’t need a PhD of Advocacy & Care to be an advocate. Just look inward.

You might even be using skills in your day to day life and not even recognized them as transferable talents. By identifying our strengths—and our challenges—we can recognize what we do best and where we need support.  For example, personal strengths could be a diplomatic demeanor, natural leadership abilities, or a positive attitude.  Personal challenges might be organizational skills, public speaking, or a compromised back.

Take inventory of your comfort zone, of all your abilities. Write down answers to the following questions (this is just for you – there is no judge and there will be no grade):

  1. Who am I?
  2. What am I good at?
  3. What are my job skills?
  4. What do I like to do?
  5. What do I want to learn?
  6. What do I avoid?
  7. Why?
  8. What do I want help with?
  9. Who can help me?
  10. Where do I find joy?

Page one of becoming an advocate is choosing the kind of advocate you want to be. You decide where you will be the most effective based on your innate and learned capacities. You dictate the action. You write the story. The next step is learning to tell it.

Until then, you take care.

the story of advocacy

the story of advocacy

 

 

Toolbox Series: Care Coordination for Caregivers

As caregivers you often do it all–personal care, medical management, bill paying–as well as transportation and domestic duties.   In most cases there are three main differences between you, the family caregivers, and professional care coordinators. Professional care managers:

  1. Educational expertise specific to case management
  2. Emotional AND  physical detachment from that of a direct care provider
  3. A paycheck

–Can’t do too much about the last two, but by using the care management tips and techniques utilized by paid supports, you can make your caregiving journey less stressful and more effective.

WHAT IS CARE COORDINATION?

Care coordination is the management of services and supports. Care Coordinators are the liaison between health care and insurance providers, support systems, and families.  According The CommonWealth Fund, a nonprofit that promotes quality health care, care coordination is the organization of community and health services.

care coordination model

care coordination model

Family caregivers can adopt professional practices by breaking care coordination into manageable steps. After all, time (and sleep) is usually at a premium.

 STEP ONE: ANNUAL ASSESSMENT

  • Evaluate your loved one’s abilities
  • Evaluate your abilities
  • Evaluate your care environment (accessibility; safety; etc)
  • Evaluate financial status (insurance; documents; etc.)
  • Evaluate legal status (guardianship; power of attorney; etc)

STEP TWO:  IDENTIFICATION

  • Medical services (type; frequency; location –home, clinic, community)
  • Mental health supports
  • Community supports
  • Education (on loved one’s challenges)
  •  Circle of support
  •  Funding
  • Advocates (Ombudsman; The Arc)

  STEP THREE: ACTION PLAN

  • Create an Individual Family Support Plan (IFSP)
  • Develop a caregiver team
  • Establish a daily routine for stability
  • Implement recordkeeping
  • Begin “next step” planning (transitions – into/out of school; into adulthood; home to group settings; advance directives; etc)
  • Find yourself supports (groups; respite providers; on-line networks; a clown)

Tools

–          IFSP (adapt to your needs)

–          Medical Home

–          Organization techniques

This is a process. Just begin at the beginning and follow the care coordination road from there. You will need courage and confidence along the way. You already have the heart. yellow brick road beginning

 

Quest for the Holy Label

Katie does not have the luxury of a label. She has a “group of conditions” with “not otherwise specified” or “pervasive and profound developmental disorder” characteristics. Try putting a label on that. Even the labeling Powers That Be in government and advocacy are inconsistent in their official terminology. They are at different evolutionary levels: Mental Retardation; Developmental Disabilities (DD); Intellectual/Developmental Disabilities.

undiagnosed

undiagnosed

Neither does Katie have distinct physical characteristics related to a label—children with Down Syndrome have recognizable facial features and look like they are part of one big family. And she is not included in a .org support community like  Children with Autism, Down Syndrome, Fragile X, Prader –Willi Syndrome, or Angelman Syndrome. There is not a publicly recognized, organized movement with colored puzzle pieces, millions of followers on Facebook, and celebrity driven fundraisers or awareness walks for people who have an unspecified developmental disability.

The label that comes to mind most quickly for the general public is antiquated, inaccurate, and derogatory: retarded. One word labels are easier to digest. They are snapshots, blinks, for people who are not immersed in the culture.

When Katie was little I wanted to know what community she fit into. So we left our round (kitchen) table and went on the Quest for the Holy Label. After years of geneticists and lab tests and examinations we still had a group of conditions without a name. The only label we had was one they needed for education and insurance coding: profound developmental disabilities.

Now, I will tell you that not knowing a name for your child’s challenges, their Something, can create blissful ignorance.  No one tells you your infant’s likelihood of a lifetime of limited capabilities: will always wear diapers; need someone to dress her, feed her, bath her; will never learn to read, or speak, say “goodnight” or “what’s for supper” or “can I borrow the car” (yeah, we can probably all live without that last one).

Katie is now an adult. In our Quest for the Holy Label we learned that she doesn’t need a label. Her challenges–moderate, profound, or unspecified—are simply part of being Katie, they are characteristics, like her curly dark hair and infectious smile