Your Independence Checkup
Independence can be scary and overwhelming, especially for those in the Down syndrome and I/DD community.

First, we all define 'independence' differently.
Second, our loved ones and their parents/caregivers each have different aspirations.
Thirdly, various obstacles may stand in the way of achieving that independence.

This Independence Checkup gauges how you are progressing and provides essential guidance to keep moving forward.

After you complete this form, you will receive your score and can receive more information to advance your independence journey HERE.
Sign in to Google to save your progress. Learn more
Email *
1. Please provide your first name (last is optional) *
2. What is the current age of your loved one with Down syndrome or other intellectual disabilities *
3. Do you have an 'Independence Team' to provide ideas, challenge, and support along the journey? *
2 points
Required
4. Have you discussed appropriate behaviors within different groups of people (friends, acquaintances, professionals, and strangers)? *
2 points
Yes
No
My child is under 3; does not apply
Discussions with your loved one?
5. Have you discussed 'stranger situations' and role-played various scenarios? *
2 points
Yes
No
My child is under 3; does not apply
Discussions regarding strangers?
6. Has your loved one been EVALUATED for the following common health risks for adults? *
4 points
Yes
No
My child is under 3; does not apply
Sleep Apnea
Hypothyroidism
7. Are you AWARE of the following common risks for adults with Down syndrome? *
8 points
Yes
No
Obesity
Depression/Anxiety
Alzheimer's disease
Autism Spectrum Disorder
8. Do you have the following in place? *
14 points
Yes
No
*Does not apply (under 18)
Special Needs Trust
Letter of Intent
Place on Medicaid Waiver waiting list
SSI/Medicaid*
ABLE account (to maximize SSI)*
SNAP (Food Stamps)*
HIPP (Healthcare insurance premium reimbursement)*
9. Have you considered guardianship to protect your ability to be involved in medical, financial, housing, etc. decisions that affect your loved one? *
2 points
10. BEFORE FIRST JOB: Are you familiar with the following? *
6 points
Yes
No
Does not apply
Earning limitations
Asset limitations
ABLE account (to protect against Asset limits)
11. How important are these considerations as part of your future aspirations? *
8 points
Very Important
Moderately Important
Not Very Important
Continuing Education beyond High School
Employment/Work
Close Relationships
Housing
12. How would you rate your loved one's hygiene skills (taking care of their body) *
4 points
Often
Sometimes
Rarely
Needs assistance
Needs reminders
13. How would you rate your loved one's problem-solving skills (fixing problems or asking for help) *
4 points
Often
Sometimes
Rarely
Fixes problems themselves
Knows when to ask for help
14. Today, people with Down syndrome are outliving their parents. What is your long-term Housing plan? *
8 points
Definitely
Maybe
No Way
Living at home w/ parents
Living w/ other relatives
Supportive community living
Independent living (home, apartment)
State institution
15. Do you have any questions or comments? I answer all questions.
16. Are you interested in Steve facilitating a free Independence Workshop with your association or organization?  Learn more on our website and email me to discuss agenda and timing with Steve. *
A copy of your responses will be emailed to the address you provided.
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