Frailty Organization Survey

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Recognizing that the Transition Guide may be outdated, Reena and Mary Centre of the Archdiocese of Toronto (Mary Centre) partnered to apply for funding under the Ministry of Community and Social Services (MCSS)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.

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

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

Developmental Services: Residential Supports

Developmental Services: Community Support Services

Developmental Services: Passport programs

Developmental Services: Transportation

Developmental Services: Cultural/Spiritual Care

Developmental Services: Case Management

Developmental Services: Service Coordination

Developmental Services: Other (please specify in other below)

Health Services: Long term care

Health Services: Developmental Disability Services/ Support

Health Services: Transportation

Health Services: Cultural/Spiritual Care

Health Services; Case Management/Service Coordination

Health Services: Health Care support (e.g.. physician care, nursing, PSW/caregiver support, rehabilitation) - please list in other

Health Services: Other (Please specify in other)

Other (please specify)

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

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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?

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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?

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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?

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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?

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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?

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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?

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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.

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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.

0-10%

11-25%

26-50%

51-60%

61-75%

76-90%

Over 90%

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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?

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

Yes (if yes, please specify type of resources in comment box below)

Staff Resources used (please specify):

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

Organization’s Mission, Vision and Values

Willingness of other organizations to partner/coordinate planning

Family Involvement

Support Circles Involvement

In house staff training

Availability and ability to access appropriate adult services for older adults

Funding flexibility

Early planning

Cross-sectorail training

Support from funders (Ministries)

Other (Please specify on comment field)

Other (please specify)

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

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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)

Additional funding (MOHLTC/MCSS)

An “Integrated Care Plan”, which combines senior health and developmental disability needs

Evidence - based senior health and developmental disability assessment tools which identify clinical frailty, dementia and other chronic diseases with aging

Partnership agreements/frameworks between health and developmental disability sector

Education/training

Other- please comment below

Other (please specify)

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

Very involved in all cases where there is family

Often involved where there is family

Sometimes involved but often families are not available

Hardly ever involved

No family involved

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

Keep an ongoing medical and behavioral history

Regularly (e.g. once or twice a year) document behavior/physical changes and discuss with team of care providers, client and caregiver

Verbally share with team of care providers, client and caregiver

None of the above

Other- please comment below

Other (please specify)

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

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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?

Yes

Maybe (please add comment)

Other (please specify)

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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?

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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?

Computer web-based access with links to resources, forms, and information

Paper copy version

Both paper and web-based versions

USB storage

Different languages

Other, please provide comments

Other (please specify)

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

Yes

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

Yes

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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.

Name

Company

Address

Address 2

City/Town

State/Province

ZIP/Postal Code

Country

Email Address

Phone Number