21andAble: Adults with Complex Transitions (ACT) INDIVIDUAL OR GUARDIAN SURVEY

 
*
1. SECTION I: DEMOGRAPHICS
The following questions are designed to help us determine how many people in Allegheny County between the ages of 14 and 29 require extensive 24/7 support, and what types of supports and services are needed.

Who are you?
*
2. SECTION I: DEMOGRAPHICS
What is the birth year of the youth/young adult with disability who is the focus of this survey? (If age is between 14 and 29, please continue with survey.)
*
3. SECTION I: DEMOGRAPHICS:
Do you or this person live in Allegheny County? If yes, please continue with survey.
*
4. SECTION I: DEMOGRAPHICS
Day programs, jobs, and activities: Where do you/this person spend waking hours? Check all that apply.
*
5. SECTION I: DEMOGRAPHICS
Where do you/this person reside?
*
6. SECTION I: DEMOGRAPHICS
Please list or describe your/this person's functional needs as completely as possible. Please check all that apply, and elaborate with comments at the end of this question.
7. SECTION II: AREAS OF NEED

For the following questions, please think about the biggest challenges facing you/this individual as you/he transitions into adult life. For each question, please describe your experiences, positive and negative, if applicable, in your attempts to access services or supports. What future challenges do you anticipate?

TRANSPORTATION (e.g., ACCESS, public, private, emergency)
8. SECTION II: AREAS OF NEED

EMPLOYMENT, DAY ACTIVITIES OR PROGRAM SUPPORT DURING THE DAY.
9. SECTION II: AREAS OF NEED

FINDING AND COORDINATING DOCTORS, SPECIALISTS, THERAPISTS AND OTHER MEDICAL OR PHYSICAL SUPPORTS.
10. SECTION II: AREAS OF NEED

MAKING FRIENDS/PARTICIPATING IN SOCIAL ACTIVITIES/ACCESSING THE COMMUNITY.
11. SECTION II: AREAS OF NEED

FINDING CONTINUING EDUCATIONAL SUPPORT AND ASSISTIVE TECHNOLOGY SUPPORT AFTER COMPLETION OF SCHOOL-AGE PROGRAMS.
12. SECTION II: AREAS OF NEED

FINDING, COORDINATING AND FUNDING BEHAVIORAL SUPPORTS.
13. SECTION II: AREAS OF NEED

FINDING, TRAINING AND RETAINING QUALIFIED HOME SUPPORT STAFF. (NURSES, RESPITE WORKERS, HABILITATION WORKERS ETC.)
14. SECTION II: AREAS OF NEED

OBTAINING FUNDING FOR ANY OF THE ABOVE REFERENCED SUPPORTS, OR FOR OTHER NEEDED SUPPORTS NOT MENTIONED.
15. SECTION III: WHAT'S IMPORTANT TO YOU?

The ACT Pilot Project hosted a Community Dialogue on November 5th where we began to identify programs, initiatives and ideas that are being explored in Pennsylvania and other states. For each of the next set of questions, please let us know how interested you would be in seeing these ideas carried out for the benefit of youth and young adults with complex needs in transition in Allegheny County.

EFFORTS THAT FOCUS ON LEGAL AND PRACTICAL OPTIONS THAT ENABLE FAMILY MEMBERS OF ADULTS WITH COMPLEX NEEDS TO STAY INVOLVED IN SUPPORTIVE DECISION MAKING.
16. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS THAT EDUCATE THE LOCAL COMMUNITY TO UNDERSTAND AND ACCEPT DISABILITY AS A NATURALLY OCCURRING CONDITION RATHER THAN AN ILLNESS, AND TO CREATE NATURAL SUPPORTS FOR THIS INDIVIDUAL WITHIN HIS OR HER OWN COMMUNITY.
17. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS THAT "RE-FRAME" SUPPORTS AND SERVICES IN TERMS OF FUNCTIONAL NEEDS RATHER THAN PARTICULAR DISABILITY LABELS. (e.g., instead of having “cerebral palsy," one might be identified as requiring help with mobility. Services and supports would be based on the severity of the challenge, not the name of the disability.)
18. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS THAT HELP FIRST RESPONDERS SUCH AS EMERGENCY MEDICAL SERVICES (EMS) PERSONNEL, POLICE AND FIREMEN, RESPOND MORE EFFECTIVELY TO INDIVIDUALS WITH SIGNIFICANT BEHAVIORAL, EMOTIONAL OR COGNITIVE CHALLENGES.
19. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS TO PROVIDE OR ENHANCE MODELS OF INTENSE CASE MANAGEMENT AND MULTIDISCIPLINARY AND INTER-AGENCY COORDINATION AND COLLABORATION FOR YOUTH AND YOUNG ADULTS WITH COMPLEX TRANSITION NEEDS (e.g. service coordinators, “micro boards”)
20. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS THAT CREATE A SEAMLESS SYSTEM OF TRANSITION FROM PEDIATRIC TO ADULT SYSTEM OF MEDICAL CARE.
21. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS WHICH ADDRESS MEDICAL AND BEHAVIORAL BARRIERS TO FULL PARTICIPATION IN EXISTING DAY PROGRAM OPTIONS. (e.g. program is unable to provide tube feedings, medicine, or behavioral supports).
22. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS WHICH CREATE NEW RESIDENTIAL OPTIONS, SUCH AS "INTENTIONAL COMMUNITIES," "LIFE SHARING" OR OTHER MODELS THAT USE NATURAL SUPPORTS IN THE COMMUNITY OF CHOICE.
23. SECTION III: WHAT'S IMPORTANT TO YOU?

EFFORTS THAT ADVOCATE FOR A LIVING WAGE FOR CAREGIVERS, THUS REDUCING HIGH TURNOVER IN SUPPORT STAFF.
24. SECTION III: WHAT'S IMPORTANT TO YOU?

ADVOCATING WITHIN EXISTING MODEL PROGRAMS TO EXPAND SUPPORT TO INDIVIDUALS WITH THE MOST CHALLENGING DISABILITIES. (e.g.,City Connections program, Allegheny Intermediate Unit’s Life program, Duquesne’s St. Anthony transition program.)
25. SECTION IV: YOUR VISIONS AND YOUR INITIATIVES
What is your vision for what life should look like for this youth/young adult (or for yourself, if you are answering on behalf of yourself)? Please take time to share your ideas in each of the following areas, and in any other area where you would like to be heard!

HEALTH AND WELLNESS:
How do you envision yourself/this person contributing to and participating in health and wellness choices? Please describe what sorts of supports and changes you believe need to be put in place in order to help make wise choices about health and welfare?:
26. SECTION IV: YOUR VISIONS AND YOUR INITIATIVES

COMMUNITY AND DAY ACTIVITY CHOICES:
Where and how would you/this person adult like to spend waking hours? What activities would you/this person like to pursue? What needs to happen?
27. SECTION IV: YOUR VISIONS AND YOUR INITIATIVES

RESIDENTIAL OPTIONS:
What types of living choices would you/this person like to have and what needs to be done to make that happen? What are the important qualities that should be reflected in any supported or independent living arrangement?
28. SECTION V. WHAT’S HAPPENING NOW?

Please share with us any current programs, ideas, and initiatives that you are aware of that are doing GOOD work addressing the needs of Adults with Complex Transitions. If you know of an idea that is working in Pennsylvania or elsewhere, please provide us with as much information and as many contacts as possible. Your input in this area is particularly important to our work
29. VI: CONCLUSION

Is there anything else you would like us to know that is important to consider when recommending changes that would enhance the life of youth and young adults with complex transition needs?
Powered by SurveyMonkey
Check out our sample surveys and create your own now!