The Multicultural Autism Action Network (MAAN) and University of Minnesota (UMN) are conducting a community needs assessment for parents and caregivers of children with and individuals with intellectual and developmental disabilities. The purpose of this needs assessment is to determine current knowledge about the transition process; your current and needed transition supports; and whether the resources, tools, and information about the transition from youth to adulthood support a culturally responsive approach.
For the purpose of this survey, transition will refer to the change in status from child/adolescent to adult and this time frame usually spans between the ages of 14-25. We recognize that the transition period is longer for some families. Families of children with disabilities have indicated that the subject of transition from youth to adulthood is of interest to them. The needs assessment survey has been created in partnership with community members and will assess what resources families are currently using and whether they are culturally accessible. The information gathered will be used to understand whether existing transition resources are accessible to individuals with disabilities and their families, especially those from rural and multicultural communities, and to create new materials that meet community needs. Participants are invited to participate through a written survey (this survey) or individual interviews. If you would prefer to answer these questions by interview, please discontinue this survey and email Dr. Hudock at kale0040@umn.edu with your preference and she will work to arrange an interview for you. Somali and Oromo interpreters are available to anyone who would like to participate. Please email Dr. Hudock (kale0040@umn.edu ) with this request.
•No personally identifiable information will be included in the survey results. •When this survey is closed and we received all responses, we will send out a summary of responses to all participants. If you have any additional questions, you can contact Dr. Rebekah Hudock (kale0040@umn.edu) Thank you!
Are you:
1) the parent/caregiver of a person with a disability?
2) a person with a disability?
* must provide value
Yes, I am a parent/caregiver of a person with a disability
Yes, I identify as a person with a disability
No
Yes, I am a parent/caregiver of a person with a disability
Yes, I identify as a person with a disability
No
What is the age of your child?
* must provide value
14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 Other
What is your age?
* must provide value
14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 Other
Who is completing this survey?
* must provide value
Mother
Father
Grandparent
Sibling
Other Caregiver (please specify)
Mother
Father
Grandparent
Sibling
Other Caregiver (please specify)
Please specify who completed the survey.
A legal guardian is someone who has the legal authority to make decisions on behalf of another person. Some people with disabilities have a legal guardian to assist them in making decisions about healthcare, finances, daily living activities, and other areas of their life. A guardian is typically a parent or other family member, but can be any other person the court decides can act in this capacity to support the person with a disability.
Does your child have a legal guardian?
* must provide value
Yes
No
Do you have a legal guardian?
* must provide value
Yes
No
If yes, who is their legal guardian?
If yes, who is your legal guardian?
Please specify legal guardian
Please specify your legal guardian
What is YOUR date of birth?
* must provide value
Today M-D-Y
What is your date of birth?
* must provide value
Today D-M-Y
What is YOUR gender?
* must provide value
Female
Male
Transgender male
Transgender female
Gender variant/Non-conforming
Not listed
Prefer not to answer
Female
Male
Transgender male
Transgender female
Gender variant/Non-conforming
Not listed
Prefer not to answer
What is your gender?
* must provide value
Female
Male
Transgender male
Transgender female
Gender variant/Non-conforming
Not listed
Prefer not to answer
Female
Male
Transgender male
Transgender female
Gender variant/Non-conforming
Not listed
Prefer not to answer
Please specify your gender
What is YOUR racial/ethnic identity?
* must provide value
What is your racial/ethnic identity?
* must provide value
Please specify your race/ethnicity
What is YOUR zipcode?
* must provide value
What is your zipcode?
* must provide value
What is your CHILD's date of birth?
* must provide value
Today M-D-Y
What is your CHILD's gender?
* must provide value
Male
Female
Transgender male
Transgender female
Gender variant/Non-conforming
Not listed
Prefer not to answer
Male
Female
Transgender male
Transgender female
Gender variant/Non-conforming
Not listed
Prefer not to answer
Please specify your CHILD's gender
What is your CHILD's racial ethnic identity?
* must provide value
Please specify your CHILD'S race/ethnicity?
Does your child currently live with you?
* must provide value
Yes
No
Do you currently live with a caregiver/parent?
* must provide value
Yes
No
If no, where do you currently live?
Alone in my home/apartment
Home/apartment with a roommate
Home/apartment with my partner/another family member
Home/apartment with a caregiver
Group home/ group residential facility
Other (please specify)
Alone in my home/apartment
Home/apartment with a roommate
Home/apartment with my partner/another family member
Home/apartment with a caregiver
Group home/ group residential facility
Other (please specify)
If other, please specify.
If no, where does your child currently live?
Alone in their home/apartment
Home/apartment with a roommate
Home/apartment with their partner/another family member
Home/apartment with a caregiver
Group home/ group residential facility
Other (please specify)
Alone in their home/apartment
Home/apartment with a roommate
Home/apartment with their partner/another family member
Home/apartment with a caregiver
Group home/ group residential facility
Other (please specify)
Please specify where you child is currently living.
If no, what is your CHILD'S zipcode?
What are your child's strengths, talents, and skills?
* must provide value
What are your strengths, talents and skills?
* must provide value
What are your child's current clinical diagnoses? (Please check all that have been diagnosed by a medical or mental health professional):
* must provide value
Autism Spectrum Disorder (ASD)
Attention Deficit/Hyperactivity Disorder (ADD/ADHD)
Intellectual Disability/Cognitive Delay
Speech or Language Impairment
Anxiety Disorder
Depression
Bipolar Disorder
Post-Traumatic Stress Disorder (PTSD)
Obsessive Compulsive Disorder (OCD)
Tourette's Syndrome/Tics
Behavioral Disorder (e.g., Oppositional Defiant Disorder, Conduct Disorder)
Learning Disability (e.g., Reading, Math, Writing, Nonverbal Learning Disorder)
Hearing Impairment
Visual Impairment
Physical or Orthopedic Impairment
Health or Medical Condition
Epilepsy or Seizure Disorder
Genetic Disorder
Down Syndrome
Other Diagnosis
Autism Spectrum Disorder (ASD)
Attention Deficit/Hyperactivity Disorder (ADD/ADHD)
Intellectual Disability/Cognitive Delay
Speech or Language Impairment
Anxiety Disorder
Depression
Bipolar Disorder
Post-Traumatic Stress Disorder (PTSD)
Obsessive Compulsive Disorder (OCD)
Tourette's Syndrome/Tics
Behavioral Disorder (e.g., Oppositional Defiant Disorder, Conduct Disorder)
Learning Disability (e.g., Reading, Math, Writing, Nonverbal Learning Disorder)
Hearing Impairment
Visual Impairment
Physical or Orthopedic Impairment
Health or Medical Condition
Epilepsy or Seizure Disorder
Genetic Disorder
Down Syndrome
Other Diagnosis
What are your current clinical diagnoses? (Please check all that have been diagnosed by a medical or mental health professional):
* must provide value
Autism Spectrum Disorder (ASD)
Attention Deficit/Hyperactivity Disorder (ADD/ADHD)
Intellectual Disability/Cognitive Delay
Speech or Language Impairment
Anxiety Disorder
Depression
Bipolar Disorder
Post-Traumatic Stress Disorder (PTSD)
Obsessive Compulsive Disorder (OCD)
Tourette's Syndrome/Tics
Behavioral Disorder (e.g., Oppositional Defiant Disorder, Conduct Disorder)
Learning Disability (e.g., Reading, Math, Writing, Nonverbal Learning Disorder)
Hearing Impairment
Visual Impairment
Physical or Orthopedic Impairment
Health or Medical Condition
Epilepsy or Seizure Disorder
Genetic Disorder
Down Syndrome
Other Diagnosis
Autism Spectrum Disorder (ASD)
Attention Deficit/Hyperactivity Disorder (ADD/ADHD)
Intellectual Disability/Cognitive Delay
Speech or Language Impairment
Anxiety Disorder
Depression
Bipolar Disorder
Post-Traumatic Stress Disorder (PTSD)
Obsessive Compulsive Disorder (OCD)
Tourette's Syndrome/Tics
Behavioral Disorder (e.g., Oppositional Defiant Disorder, Conduct Disorder)
Learning Disability (e.g., Reading, Math, Writing, Nonverbal Learning Disorder)
Hearing Impairment
Visual Impairment
Physical or Orthopedic Impairment
Health or Medical Condition
Epilepsy or Seizure Disorder
Genetic Disorder
Down Syndrome
Other Diagnosis
Please specify your child's genetic disorder.
Please specify your genetic disorder.
Please specify your child's health or medical condition.
Please specify your health or medical condition.
Please specify your child's physical or orthopedic impairment.
Please specify your physical or orthopedic impairment.
Please specify your child's diagnosis.
Please specify your diagnosis.
Please indicate if your child has received any of the following services in the last 12 months (i.e., at school, home, clinic, within the community, etc.). Select all that apply.
* must provide value
Adaptive recreation services or activities (e.g., adaptive soccer, Special Olympics)
Art therapy
Assistive technology services/devices (e.g., Dynavox, tape recorder, reading machine)
Audiology services for hearing problems/impairment
Behavioral services (e.g., 1:1 behavioral aide, home behavioral consultant)
Career counseling, help in finding a job, training in job skills or vocational education
Financial support or assistance (e.g., Supplemental Security Income (SSI), Medicaid)
Music therapy
In-home nursing care
Occupational therapy
Personal assistant or an in-the-home aide
Psychological or mental health services or counseling
Physical therapy
Respite care
School services or accommodations (e.g., IEP plan, one-on-one aide, modified curriculum, additional time on tests, additional individual or group instruction)
Service coordination or case management
Services from county or state agencies (e.g., disability waiver)
Sexual education/Sexuality class
Social skills classes or groups
Social work services
Speech or language therapy, or communication services
Transportation
Tutoring
Other service(s)
Adaptive recreation services or activities (e.g., adaptive soccer, Special Olympics)
Art therapy
Assistive technology services/devices (e.g., Dynavox, tape recorder, reading machine)
Audiology services for hearing problems/impairment
Behavioral services (e.g., 1:1 behavioral aide, home behavioral consultant)
Career counseling, help in finding a job, training in job skills or vocational education
Financial support or assistance (e.g., Supplemental Security Income (SSI), Medicaid)
Music therapy
In-home nursing care
Occupational therapy
Personal assistant or an in-the-home aide
Psychological or mental health services or counseling
Physical therapy
Respite care
School services or accommodations (e.g., IEP plan, one-on-one aide, modified curriculum, additional time on tests, additional individual or group instruction)
Service coordination or case management
Services from county or state agencies (e.g., disability waiver)
Sexual education/Sexuality class
Social skills classes or groups
Social work services
Speech or language therapy, or communication services
Transportation
Tutoring
Other service(s)
Please indicate if you have received any of the following services in the last 12 months (i.e., at school, home, clinic, within the community, etc.). Select all that apply.
* must provide value
Adaptive recreation services or activities (e.g., adaptive soccer, Special Olympics)
Art therapy
Assistive technology services/devices (e.g., Dynavox, tape recorder, reading machine)
Audiology services for hearing problems/impairment
Behavioral services (e.g., 1:1 behavioral aide, home behavioral consultant)
Career counseling, help in finding a job, training in job skills or vocational education
Financial support or assistance (e.g., Supplemental Security Income (SSI), Medicaid)
Music therapy
In-home nursing care
Occupational therapy
Personal assistant or an in-the-home aide
Psychological or mental health services or counseling
Physical therapy
Respite care
School services or accommodations (e.g., IEP plan, one-on-one aide, modified curriculum, additional time on tests, additional individual or group instruction)
Service coordination or case management
Services from county or state agencies (e.g., disability waiver)
Sexual education/Sexuality class
Social skills classes or groups
Social work services
Speech or language therapy, or communication services
Transportation
Tutoring
Other service(s)
Adaptive recreation services or activities (e.g., adaptive soccer, Special Olympics)
Art therapy
Assistive technology services/devices (e.g., Dynavox, tape recorder, reading machine)
Audiology services for hearing problems/impairment
Behavioral services (e.g., 1:1 behavioral aide, home behavioral consultant)
Career counseling, help in finding a job, training in job skills or vocational education
Financial support or assistance (e.g., Supplemental Security Income (SSI), Medicaid)
Music therapy
In-home nursing care
Occupational therapy
Personal assistant or an in-the-home aide
Psychological or mental health services or counseling
Physical therapy
Respite care
School services or accommodations (e.g., IEP plan, one-on-one aide, modified curriculum, additional time on tests, additional individual or group instruction)
Service coordination or case management
Services from county or state agencies (e.g., disability waiver)
Sexual education/Sexuality class
Social skills classes or groups
Social work services
Speech or language therapy, or communication services
Transportation
Tutoring
Other service(s)
Please specify other service(s).
If you are completing the survey about yourself, please indicate your current level of concern about yourself in the following areas:
If you are a parent/caregiver, please indicate your current level of concern about your child in the following areas:
Please specify other concern.
Which 3 areas listed above are most concerning as your child makes the transition to adulthood?
1.
2.
3.
Which 3 areas listed above are most concerning as you make the transition to adulthood?
1.
2.
3.
What is most important to you when planning your child's transition to adulthood?
What is most important to you when planning your own transition to adulthood?
* must provide value
What are your goals for your child in the next 5 years?
* must provide value
What are your goals for yourself for the next 5 years?
* must provide value
What is one thing that could make the transition to adulthood easier for you and your family?
* must provide value
Do you feel like your cultural identity influences the way you plan for your child's transition to adulthood?
* must provide value
Not at all
Somewhat
Moderately
Very Much
Not at all
Somewhat
Moderately
Very Much
Do you feel like your cultural identity influences the way you plan for your transition to adulthood?
* must provide value
Not at all
Somewhat
Moderately
Very much
Not at all
Somewhat
Moderately
Very much
Please describe how your cultural background and identity influence how to plan for your child's transition to adulthood.
Please write "NA" if you do not feel like your cultural identity influences your transition planning.
* must provide value
Please describe how your cultural background and identity influence how to plan for your transition to adulthood.
Please write "NA" if you do not feel like your cultural identity influences your transition planning.
* must provide value
Do you feel like the transition information and supports you have received have been culturally appropriate for your family?
* must provide value
Not at all
Somewhat
Moderately
Very Much
Unsure
Not at all
Somewhat
Moderately
Very Much
Unsure
How confident are you in knowing what transition services are available?
* must provide value
Not at all confident
Slightly confident
Moderately confident
Very confident
Not at all confident
Slightly confident
Moderately confident
Very confident
How confident are you in your ability to navigate the transition to adulthood with your child?
* must provide value
Not at all confident
Slightly confident
Moderately confident
Very confident
Not at all confident
Slightly confident
Moderately confident
Very confident
How confident are you in your ability to navigate the transition to adulthood?
* must provide value
Not at all confident
Slightly confident
Moderately confident
Very confident
Not at all confident
Slightly confident
Moderately confident
Very confident
Is your child currently in school or attending an educational training program?
* must provide value
Yes
No
Are you currently in school or attending an educational training program?
* must provide value
Yes
No
If yes, what type of program do they currently attend?
Middle school
High School
District 18-21 Transition Program
Other Transition Program
Community/Tech/Vocational School
Undergraduate College/University Program
Graduate School Program
Middle school
High School
District 18-21 Transition Program
Other Transition Program
Community/Tech/Vocational School
Undergraduate College/University Program
Graduate School Program
If yes, what type of program do you currently attend?
Middle school
High School
District 18-21 Transition Program
Other Transition Program
Community/Tech/Vocational School
Undergraduate College/University Program
Graduate School Program
Middle school
High School
District 18-21 Transition Program
Other Transition Program
Community/Tech/Vocational School
Undergraduate College/University Program
Graduate School Program
Please describe other transition program.
Please specify type of coursework/areas of study.
Please specify type of degree program/major/area of study
Please specify type of degree program/area of study.
What is your child's current grade/year in their program?
What is your current grade/year in their program?
If in Middle School/High School, what type of classroom is your child in? (e.g., regular education, special education, self-contained classroom, autism, learning disability, multiple disability, home schooled, etc.)
If in Middle School/High School, what type of classroom are you in? (e.g., regular education, special education, self-contained classroom, autism, learning disability, multiple disability, home schooled, etc.)
Does your child CURRENTLY have an Individualized Education Program (IEP)?
* must provide value
Yes
No
No IEP, but receiving other services or academic accommodations
Unsure
NA, not in school
Yes
No
No IEP, but receiving other services or academic accommodations
Unsure
NA, not in school
Do you CURRENTLY have an Individualized Education Program (IEP)?
* must provide value
Yes
No
No IEP, but receiving other services or academic accommodations
Unsure
NA, not in school
Yes
No
No IEP, but receiving other services or academic accommodations
Unsure
NA, not in school
Please describe other services or academic accommodations.
If YES, what types of services does your child receive through their IEP (e.g., speech therapy, occupational therapy, one on one aide, tutoring, extra time on tests, etc.).
If YES, what types of services do you receive through your IEP (e.g., speech therapy, occupational therapy, one on one aide, tutoring, extra time on tests, etc.).
If they have an IEP, does your child have a transition plan through their school that is helping to prepare your child for the transition to adulthood
* must provide value
yes
no
unsure
NA, not in school
yes
no
unsure
NA, not in school
If you have an IEP, do you have a transition plan through your school that is helping to prepare you for the transition to adulthood?
* must provide value
yes
no
unsure
NA, not in school
yes
no
unsure
NA, not in school
How old was your child when you began planning for transition through his/her school? If you are unsure, please put "idk" or "I don't know".
How old were you when you began planning for transition through school? If you are unsure, please put "idk" or "I don't know".
Who is involved in the transition planning (e.g., student, parent, special education teacher, vocational counselor, etc.)? If you are unsure, please put "IDK" or "I don't know".
What are some of the specific goals in your child's transition plan?
If you are unsure, please put "IDK" or "I don't know".
What are some of the specific goals in your transition plan?
If you are unsure, please put "IDK" or "I don't know".
* must provide value
Are you satisfied with the transition process through school?
* must provide value
Yes
No
Please describe why you are or are not satisfied with the transition process?
* must provide value
Do you anticipate that your child will attend an 18-21 transition program through your school district?
yes
no
unsure
Do you anticipate that you will attend an 18-21 transition program through your school district?
yes
no
unsure
Does your child currently work or participate in any community service or volunteer work?
* must provide value
Yes (Working for pay)
Yes (Volunteering)
No (not currently working or volunteering)
Yes (Working for pay)
Yes (Volunteering)
No (not currently working or volunteering)
Does your child want to currently be working or volunteering?
Yes
No
Do you currently work or participate in any community service or volunteer work?
* must provide value
Yes (Working for pay)
Yes (Volunteering)
No (not currently working or volunteering)
Yes (Working for pay)
Yes (Volunteering)
No (not currently working or volunteering)
Do you currently want to be working or volunteering?
Yes
No
What type of support/assistance do you think your child will need in finding/maintaining a job? (Please check all that apply)
* must provide value
Will not need any support
Career counseling or career interest assessments
Assistance finding a job (e.g., interviewing skills, job placement)
Basic or specific job skill training
Assistance when problems or new situations/demands arise on the job
Time limited support to learn the job (i.e., extra training)
Long term support to learn the job (i.e., ongoing training)
Ongoing support to perform the job (e.g., job coach)
Will not need any support
Career counseling or career interest assessments
Assistance finding a job (e.g., interviewing skills, job placement)
Basic or specific job skill training
Assistance when problems or new situations/demands arise on the job
Time limited support to learn the job (i.e., extra training)
Long term support to learn the job (i.e., ongoing training)
Ongoing support to perform the job (e.g., job coach)
What type of support/assistance do you think you will need in finding/maintaining a job? (Please check all that apply)
* must provide value
Will not need any support
Career counseling or career interest assessments
Assistance finding a job (e.g., interviewing skills, job placement)
Basic or specific job skill training
Assistance when problems or new situations/demands arise on the job
Time limited support to learn the job (i.e., extra training)
Long term support to learn the job (i.e., ongoing training)
Ongoing support to perform the job (e.g., job coach)
Will not need any support
Career counseling or career interest assessments
Assistance finding a job (e.g., interviewing skills, job placement)
Basic or specific job skill training
Assistance when problems or new situations/demands arise on the job
Time limited support to learn the job (i.e., extra training)
Long term support to learn the job (i.e., ongoing training)
Ongoing support to perform the job (e.g., job coach)
In the future, where will your child likely live?
* must provide value
At home with parents
In college housing (e.g., dorm)
In an apartment/house/condo on their own- alone or with a roommate
In a supported apartment/living program- alone or with a roommate
In a group home
In a subsidized housing
With a family member (other than with parents/caregivers at home
Other
At home with parents
In college housing (e.g., dorm)
In an apartment/house/condo on their own- alone or with a roommate
In a supported apartment/living program- alone or with a roommate
In a group home
In a subsidized housing
With a family member (other than with parents/caregivers at home
Other
In the future, where will you likely live?
* must provide value
At home with parents
In college housing (e.g., dorm)
In an apartment/house/condo on their own- alone or with a roommate
In a supported apartment/living program- alone or with a roommate
In a group home
In a subsidized housing
With a family member (other than with parents/caregivers at home
Other
At home with parents
In college housing (e.g., dorm)
In an apartment/house/condo on their own- alone or with a roommate
In a supported apartment/living program- alone or with a roommate
In a group home
In a subsidized housing
With a family member (other than with parents/caregivers at home
Other
If other, please specify where your child will likely live.
If other, please specify where you will likely live.
What concerns do you have about your child living on their own or their future residential placement?
* must provide value
What concerns do you have about living on your own or a future residential placement?
* must provide value
What supports will your child need to achieve their desired living arrangements following high school?
* must provide value
What supports will you need to achieve your desired living arrangements following high school?
* must provide value
What supports or services do you think your child will need in the future to facilitate participation in young adult life?
* must provide value
What supports or services do you think you will need in the future to facilitate participation in young adult life?
* must provide value
Please specify other supports or services you think your child will need.
Please specify other supports or services you think you will need.
Have you considered options such as guardianship (i.e., a legally established person makes decisions about housing, medical care, and legal issues) or conservatorship (i.e., a legally established person makes decisions about financial issues) for your child?
Yes
No
Have you considered options such as guardianship (i.e., a legally established person makes decisions about housing, medical care, and legal issues) or conservatorship (i.e., a legally established person makes decisions about financial issues) for your future?
Yes
No
If YES, are you aware of the different levels of guardianship and/or less restrictive alternatives to guardianship?
Yes
No
If YES, are you aware of the different levels of guardianship and/or less restrictive alternatives to guardianship?
Yes
No
Do you feel that you have received enough information about guardianship or conservatorship to make an informed decision?
Yes
No
Supported Decision Making is a framework that allows individuals with disabilities to make choices and decisions about their own lives with the support from a team of people they choose. Their team may include friends, family members, professionals, or others of their choosing.
Are you familiar with Supported Decision Making?
Yes
No
If YES, would you consider supported decision making in place of guardianship and/or conservatorship?
yes
no
unsure
Does your child have friends?
* must provide value
Yes
No
Do you have friends?
* must provide value
Yes
No
In the future, do you feel that your son/daughter will: (check all that apply)
* must provide value
In the future, do you feel that you will: (check all that apply)
* must provide value
How would you prefer to receive information about transition planning? (choose all that apply)
* must provide value
Webinars
In-person coaching or trainings
Disability-focused websites
Classes or groups with other families navigating transition
Through an individual counselor/therapist
Resources emailed to me
Through a community organization specific to my cultural identity
Through state-wide organizations (e.g., Department of Education, Department of Health)
Through my child's school
Through my child's doctor or other medical provider
Through disability organizations (e.g., the ARC, Autism Society, Disability-focused clinic)
Through my faith community
Books about transition
From other families who have already navigated transition to adulthood
Webinars
In-person coaching or trainings
Disability-focused websites
Classes or groups with other families navigating transition
Through an individual counselor/therapist
Resources emailed to me
Through a community organization specific to my cultural identity
Through state-wide organizations (e.g., Department of Education, Department of Health)
Through my child's school
Through my child's doctor or other medical provider
Through disability organizations (e.g., the ARC, Autism Society, Disability-focused clinic)
Through my faith community
Books about transition
From other families who have already navigated transition to adulthood
Is there anything else you'd like to share about your family's transition planning experience?
Other information or resources that would be helpful to you in navigating transition?
If so, please describe here.
Thank you so much for your time to complete this survey!
If you would like to be notified of the results of this survey in the future, please provide your email:
Submit
Save & Return Later