CdLS Foundation Transition and Adult Services Survey

This survey is aimed at finding out how the CdLS Foundation can help people with CdLS as they get ready to transition, and ultimately transition, from the school system (and services provided to school-age children) to adult life and the services available to adults.

The survey seeks information about people with CdLS ages 13 and up so as to cover the transition planning process, as well as the actual receipt of adult services.

Through your responses, the Foundation hopes to get a better idea of the adult services currently being planned for, sought or received by people with CdLS so it can identify problem areas and help with possible solutions.

1. Information on person with CdLS:

Information on person with CdLS: First Name
Last Name
Date of Birth (mm/dd/yyyy)

2. Information on person responding to survey:

Information on person responding to survey: First Name:
Last Name:
Street:
City/Town:
Zip:
State:
Phone (day):
Phone (evening):
Phone (cell):
Email address:

3. Do you authorize the CdLS Foundation to provide your contact information to other CdLS families or caregivers for purposes of information sharing and support?

Do you authorize the CdLS Foundation to provide your contact information to other CdLS families or caregivers for purposes of information sharing and support? Yes

If Yes, what is your preferred method of contact: phone or email

4. Identity of person responding to survey:

Identity of person responding to survey: Self (person with CdLS)

Parent

Other family member or guardian

Professional care giver or service provider

Other (please describe):

5. Current living arrangement of person with CdLS:

Current living arrangement of person with CdLS: With parent

With other family member(s) or guardian

Independently in own home (with or without support services)

Residential school

Group home

Intermediate care facility (ICF/MR)

Nursing home

State developmental center

Other (please describe):

6. Please specify information on any facility identified in question 5 above:

Please specify information on any facility identified in question 5 above: Name of Facility:
Operator of Facility:
Address:
Address 2:
City/Town:
State:
ZIP:
Contact Person:
Email Address:
Phone Number:

7. For those who are old enough to be eligible for adult services, please indicate what if any services are currently being received (check all that are applicable):

For those who are old enough to be eligible for adult services, please indicate what if any services are currently being received (check all that are applicable): Residential services

Housing/individual support services

In-home services

Employment/vocational training services

Day services

Transportation

Health care

Counseling

Environmental modification/adaptive equipment

Recreational services

Respite for caregiver

Family support services

Service coordination/social worker services

None

Other (please describe):

8. Is the person with CdLS on a waiting list for adult services?

Is the person with CdLS on a waiting list for adult services? Yes

9. If Yes:

If Yes: What services?
How long has person with CdLS been on the waiting list?
Expected date to receive services?

10. If you are experiencing or have experienced difficulty in getting adult services (list all that apply):

If you are experiencing or have experienced difficulty in getting adult services (list all that apply): General scarcity of services in our area

Behavior issues of person with CdLS

Difficulty in meeting medical needs of person with CdLS

Other (please describe):

11. If behavior issues are a reason for difficulty in getting adult services (question 10), please specify (check all that apply):

If behavior issues are a reason for difficulty in getting adult services (question 10), please specify (check all that apply): Aggression

Anxiety

Self-injurious behaviors

Other (please describe):

12. If difficulty in meeting medical needs of person with CdLS is a reason for difficulty in getting adult services (question 10), please specify (check all that apply):

If difficulty in meeting medical needs of person with CdLS is a reason for difficulty in getting adult services (question 10), please specify (check all that apply): Feeding

Mobility/orthopedic

Seizures

Hearing

Communication

Vision

Other (please describe):

13. If person with CdLS has transitioned to adult services, please describe the emotional impact of the transition/separation/change in living arrangements on the person with CdLS:

If person with CdLS has transitioned to adult services, please describe the emotional impact of the transition/separation/change in living arrangements on the person with CdLS: Few or no significant or prolonged emotional issues

Increased anxiety

Increased low mood or depression

Increased behavioral challenges

Initially difficult emotionally, but reasonably okay now

Persistent serious separation issues

Other (please describe):

14. If the person with CdLS has transitioned to adult services, what was the emotional impact of the transition/separation/change in living arrangements ON THE FAMILY of the person with CdLS (please check all that apply):

If the person with CdLS has transitioned to adult services, what was the emotional impact of the transition/separation/change in living arrangements ON THE FAMILY of the person with CdLS (please check all that apply): Stress because of lack of guidance about transition/separation

Stress because of lack of appropriate service options

Stress because of concern about future well-being of person with CdLS

Stress because of financial issues related to adult services for person with CdLS

Relief once appropriate arrangements were made

Guilt about placing person with CdLS outside the family home

Other (please describe):

15. If the person with CdLS is too young to be eligible for adult services, has transition planning begun?

If the person with CdLS is too young to be eligible for adult services, has transition planning begun? Yes

16. If the answer to question 15 is yes, please describe what has been done and/or scheduled to be done?

If the answer to question 15 is yes, please describe what has been done and/or scheduled to be done? Inclusion of transition planning in IEP

Involvement of government agency responsible for adult services

Contact with private agency(ies)

Other (please describe):

17. How can the CdLS Foundation help you in transition planning or ongoing issues with respect to adult services?

How can the CdLS Foundation help you in transition planning or ongoing issues with respect to adult services? Networking with other individuals

Access to databank of service providers

Information about government programs

Advice to help person with CdLS deal with emotional issues of transitioning to adult living

Advice to help family members deal with their own transition related emotional issues

Step by step guide to transition process

Other (please describe):

18. Other comments, questions, suggestions? Please let us know what is on your mind.

Other comments, questions, suggestions? Please let us know what is on your mind.

CdLS Foundation Transition and Adult Services SurveyExit this survey