Purpose of this survey

The aging and long term care committee is comprised of members of the Down Syndrome Guild, the Mission Project, KU Medical Center and other interested parties. We are parents, grandparents, siblings of people with Down syndrome and professionals who are passionate about meeting the aging needs of those living with Down syndrome.

The committee has been exploring options for adults who are aging with Down syndrome and may require additional supports. We are asking families who have a loved one with Down syndrome who is 25 or older to complete this survey to help us plan for the future. Your feedback will help us thoughtfully consider new programs, educational initiatives and partnerships with medical professionals and nursing homes.

All survey results will remain anonymous. If you would like more information on baseline testing for dementia, group homes or assisted living facilities for persons with Down syndrome and other intellectual disabilities please email info@kcdsg.org  Thank you for completing the survey!

* 1. How old is your child with Down syndrome?

* 2. Is your child male or female?

* 3. What is your age?

* 4. Are you the legal guardian for your son/daughter?

* 5. Do you have someone named to be a successor guardian if something should happen to you?

* 6. Where does your son/daughter currently reside?

* 7. Was your son/daughter a patient at the Children's Mercy Down Syndrome Clinic when younger?

* 8. Has your son/daughter been seen at the Adult Down Syndrome Clinic at KU Medical Center?

* 9. Has your son/daughter had a baseline examination for dementia?

* 10. Would you like for your son/daughter to have a baseline examination for dementia?

* 11. What are your plans for the living needs of your son/daughter should he/she develop dementia in the next 5-10 years?

* 12. Are you preparing to make, or have you already made, modifications to your son/daughter's living environment to accommodate his/her needs should he/she develop dementia.

* 13. Would you be interested in learning more about a group home or assisted living facility for persons with developmental disabilities who have dementia or other health concerns related to aging? 

* 14. Does your son/daughter attend a day program?

* 15. Would you recommend this Day Program to others?

* 16. Does your son/daughter currently work? 

* 17. If your son/daughter works please describe the setting.

* 18. Do you have a Special Needs Trust set up for your son/daughter?

* 19. Would you like more information on establishing a Special Needs Trust?

* 20. Do you plan to set up an ABLE Account for your son/daughter?

* 21. If you have an ABLE Account or Special Needs Trust what is the approximate value of the account today?

* 22. Please indicate any topics you would be interested in learning more about.

* 23. Please share any suggestions for programming or supports your family would like to see the committee explore.

* 24. Is your son/daughter currently on a Medicaid Waiver? 

* 25. Select the statement that best reflects your son/daughter's current state of health. 

* 26. Select the level of supervision your son/daughter requires for safety purposes.

* 27. Please provide your name and contact information if you would like someone from the committee to contact you regarding your interests identified in this survey. 

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50% of survey complete.