AGING WITH A DEVELOPMENTAL DISABILITY (DD) ORGANIZATION SURVEY

Current research indicates that individuals with Developmental Disabilities (DD) often show signs and symptoms related to frailty and aging earlier than those without DD, and that such individuals are more likely to develop significant health and mobility issues earlier as they age.
 
An integrated and coordinated approach to care between the DD and health care sectors, combined with early transitional planning will result in improved social and health outcomes for aging adults with a DD.  In addition, caregivers who often experience crisis/burn out due to limited respite and lack of knowledge related to the health care sector, as well as their ongoing responsibilities, will also benefit from this approach.
 
You may recall that in 2005, the Ontario Partnership on Aging and Developmental Disabilities (OPADD) Transition Task Group participated in creating a comprehensive Aging with a Developmental Disability – Transition Guide For Caregivers funded by the Ontario Trillium Foundation. TheTransition Guide included transition planning information, resources, tools etc., and was a resource for both caregivers and service providers. 
 
Recognizing that the Transition Guide may be outdated, Reena and Mary Centre of the Archdiocese of Toronto (Mary Centre) partnered to apply for funding under the Ministry of Community and Social Services (MCSS) Employment and Modernization Fund to update the Transition Guide. 
 
In particular, the guide would create an inter-active web-based, cross – sectorial (Developmental and Senior Health Services) provincial resource, to improve timely access for individuals with developmental disabilities to health and senior services.
 
We are pleased to inform you that Reena and Mary Centre were successful in achieving funding support for this project proposal.
 
As part of its consultation process, the Transition Guide Project Leads have met with provincial and regional committees working with the DD community, senior health care services, and other providers to identify specific supports, gaps and transitional planning needs for individuals aging with a DD.   For the purposes of the Guide, transitional planning is defined as a process of discussion and communication that:
     -Seeks to understand the changing needs of an individual with developmental disabilities as they age
     -Identifies specific support requirements of that individual due to the aging process, and
     -Works toward accessing older adult services for the individual with DD and/or their caregiver.

An important component of developing a current Transitional Guide is understanding the capacity of the system to plan for the changing needs of persons with DD as they age. Since these planning processes take place at the level of the local agency, your response can inform this important project.  We are therefore requesting that you answer a few questions that will take about 10 – 15 minutes of your time to complete. Please complete this survey by June 8, 2018.
 
 
On behalf of Reena and Mary Centre, we would like to thank you in advance for your support in this important project.  We are thrilled to be able to invest in resources and tools, which support early, individualized and integrated transitional planning with choices, respect and inclusivity for the individual with DD and their caregivers. If you have any questions or wish to speak further with the project leads, you can contact Mindy Ginsler at ginslerm@yahoo.ca or Christel Galea at qualityhmc@gmail.com.
 
 
 


Demographics: Please provide the  name of your organization, address and the respondent contact information:

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* 1. Demographics: Please provide the  name of your organization, address and the respondent contact information:

Demographics: What kinds of services/programs do you typically provide for seniors?

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* 2. Demographics: What kinds of services/programs do you typically provide for seniors?

Demographics: What is the total number of adults (18+) with a developmental disability that you serve in residential programs?

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* 3. Demographics: What is the total number of adults (18+) with a developmental disability that you serve in residential programs?

Demographics: What is the total number of adults (18+) with a developmental disability that you serve in non-residential programs?

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* 4. Demographics: What is the total number of adults (18+) with a developmental disability that you serve in non-residential programs?

Demographics: Of the total number of adults with a developmental disability served by your organization, how many are (if known) between 18-30 years?

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* 5. Demographics: Of the total number of adults with a developmental disability served by your organization, how many are (if known) between 18-30 years?

Demographics: Of the total number of adults with a developmental disability served by your organization, how many are (if known) between 31-40 years?

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* 6. Demographics: Of the total number of adults with a developmental disability served by your organization, how many are (if known) between 31-40 years?

Demographics: Of the total number of adults with  developmental disability served by your organization, how many (if known) are between 41-50 years?

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* 7. Demographics: Of the total number of adults with  developmental disability served by your organization, how many (if known) are between 41-50 years?

Demographics: Of the total number of adults with a developmental disability served by your organization, how many (if known) are between 51-60 years?

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* 8. Demographics: Of the total number of adults with a developmental disability served by your organization, how many (if known) are between 51-60 years?

Demographics: Of the total number of adults with a developmental disability served by your organization, how many (if known) are between 61-70 years?

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* 9. Demographics: Of the total number of adults with a developmental disability served by your organization, how many (if known) are between 61-70 years?

Demographics: Of the total number of adults with  a developmental disability served by your organization, how many (if known) are over 71 years?

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* 10. Demographics: Of the total number of adults with  a developmental disability served by your organization, how many (if known) are over 71 years?

Demographics: What kind of services/supports has your organization accessed to support senior adults with a developmental disability? Please identify/list those used most frequently.

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* 11. Demographics: What kind of services/supports has your organization accessed to support senior adults with a developmental disability? Please identify/list those used most frequently.

Demographics: Approximately what percentage of the total number of people served with a developmental disability are involved in some form of planning related to aging? Please approximate percentage.

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* 12. Demographics: Approximately what percentage of the total number of people served with a developmental disability are involved in some form of planning related to aging? Please approximate percentage.

Demographics: Could you describe the approach/process of your organizations to planning for people with developmental disabilities as they age?

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* 13. Demographics: Could you describe the approach/process of your organizations to planning for people with developmental disabilities as they age?

Demographics: Do you have identified staff resources for persons aging with developmental  disabilities?

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* 14. Demographics: Do you have identified staff resources for persons aging with developmental  disabilities?

What do you feel are the three (3) most important factors that make for a successful planning process?

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* 15. What do you feel are the three (3) most important factors that make for a successful planning process?

What would you need to change to make the planning process more effective?

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* 16. What would you need to change to make the planning process more effective?

What would your organization require to be able to play a greater role in the transition planning/process? (Check all that apply)

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* 17. What would your organization require to be able to play a greater role in the transition planning/process? (Check all that apply)

How would you describe the level of involvement that the person and their families  have in transition planning?

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* 18. How would you describe the level of involvement that the person and their families  have in transition planning?

How are you monitoring medical, behavioral and physical changes that may be related to aging?  (Check all that apply).

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* 19. How are you monitoring medical, behavioral and physical changes that may be related to aging?  (Check all that apply).

What is the one thing you would change to make life easier in the planning process?

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* 20. What is the one thing you would change to make life easier in the planning process?

Would your organization be interested in using and being trained for the use of early recognition, detection and screening tool  to identify changes in care needs for the person aging and their caregiver?

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* 21. Would your organization be interested in using and being trained for the use of early recognition, detection and screening tool  to identify changes in care needs for the person aging and their caregiver?

Is there any advice you would offer from your organization’s experience to improve planning for adults aging with developmental disabilities and their caregivers?

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* 22. Is there any advice you would offer from your organization’s experience to improve planning for adults aging with developmental disabilities and their caregivers?

The new Transitional Guide will be called Aging with a Developmental Disability: Planning for Success.In what format would you prefer the new Guide to be available for your organization’s use?

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* 23. The new Transitional Guide will be called Aging with a Developmental Disability: Planning for Success.In what format would you prefer the new Guide to be available for your organization’s use?

Would you like in-house training for the new Guide?

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* 24. Would you like in-house training for the new Guide?

Would you be interested in being a pilot site for testing the new Guide?

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* 25. Would you be interested in being a pilot site for testing the new Guide?

May we contact you if necessary to clarify any of your responses? If yes, please provide your contact information in below.

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* 26. May we contact you if necessary to clarify any of your responses? If yes, please provide your contact information in below.

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