NDD Healthcare Survey

The purpose of this survey is to better understand healthcare transition for adults with neurodevelopmental disabilities (NDD) including ID/DD and Autism Spectrum Disorder. We are asking caregivers (including parents, guardians, caseworkers and/or support people) to describe several things about medical providers for the individual with NDD. We welcome answers directly from the individual with NDD as possible.

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* 1. What is the age of the person with neurodevelopmental disabilities (NDD), such as intellectual or developmental disabilities (ID/DD) or Autism Spectrum Disorder (ASD)?

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* 2. Who provides primary care for that person?

Pediatrician

Family medicine physician

Internist (adult primary care)

No current primary care provider

Other (specialty, etc.) Please specify:

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* 3. Does the person have a dentist?

Yes

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* 4. If the person has a dentist, is the dentist:

Pediatric

Adult

Unsure if pediatric or adult

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* 5. Does the person see any specialty providers?

Yes

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* 6. If you checked ‘yes’ to the question above, please mark the specialists seen by the individual.


Neurologist	Neurologist menu
Psychiatrist	Psychiatrist menu
Psychologist/Counselor/Therapist	Psychologist/Counselor/Therapist menu
Gastroenterology (GI)	Gastroenterology (GI) menu
Gynecology	Gynecology menu

Other (please describe)

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* 7. If the person is seeing a family medicine physician or an internist (adult primary care), at what age did the person transfer from their pediatrician?

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* 8. Who helped facilitate your transfer? (choose all that apply)

Pediatrician

Pediatric Specialist

School

Home health team

Community agency

Support groups

None

Other (please specify)

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* 9. If the person is less than 26 and has not yet transferred to an adult primary care physician, how confident are you that the person will be able to transfer by the age of 26?

Not confident at all

Somewhat confident

Fairly confident

Very confident

Not confident at all

Somewhat confident

Fairly confident

Very confident

Please explain your answer choice.

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* 10. If the person has already transferred to adult primary care, rate your degree of agreement with the following statements.

	Strongly disagree	Somewhat disagree	Neutral	Somewhat agree	Strongly agree
“We were satisfied with the transition process.”	“We were satisfied with the transition process.” Strongly disagree	“We were satisfied with the transition process.” Somewhat disagree	“We were satisfied with the transition process.” Neutral	“We were satisfied with the transition process.” Somewhat agree	“We were satisfied with the transition process.” Strongly agree
"We feel there is a good fit between the patient and the primary care provider.”	"We feel there is a good fit between the patient and the primary care provider.” Strongly disagree	"We feel there is a good fit between the patient and the primary care provider.” Somewhat disagree	"We feel there is a good fit between the patient and the primary care provider.” Neutral	"We feel there is a good fit between the patient and the primary care provider.” Somewhat agree	"We feel there is a good fit between the patient and the primary care provider.” Strongly agree
"We feel all primary care medical needs are taken care of."	"We feel all primary care medical needs are taken care of." Strongly disagree	"We feel all primary care medical needs are taken care of." Somewhat disagree	"We feel all primary care medical needs are taken care of." Neutral	"We feel all primary care medical needs are taken care of." Somewhat agree	"We feel all primary care medical needs are taken care of." Strongly agree
"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).”	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Strongly disagree	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Somewhat disagree	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Neutral	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Somewhat agree	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Strongly agree

What would have been helpful in the process of transferring to ADULT PRIMARY CARE that was not addressed?

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* 11. If the individual has transitioned to adult specialty care, rate your degree of agreement with the following statements:

	Strongly disagree	Somewhat disagree	Neutral	Somewhat agree	Strongly agree
“We were satisfied with the transition process.”	“We were satisfied with the transition process.” Strongly disagree	“We were satisfied with the transition process.” Somewhat disagree	“We were satisfied with the transition process.” Neutral	“We were satisfied with the transition process.” Somewhat agree	“We were satisfied with the transition process.” Strongly agree
"We feel there is a good fit between the patient and the specialty care provider.”	"We feel there is a good fit between the patient and the specialty care provider.” Strongly disagree	"We feel there is a good fit between the patient and the specialty care provider.” Somewhat disagree	"We feel there is a good fit between the patient and the specialty care provider.” Neutral	"We feel there is a good fit between the patient and the specialty care provider.” Somewhat agree	"We feel there is a good fit between the patient and the specialty care provider.” Strongly agree
"We feel all specialty care medical needs are taken care of."	"We feel all specialty care medical needs are taken care of." Strongly disagree	"We feel all specialty care medical needs are taken care of." Somewhat disagree	"We feel all specialty care medical needs are taken care of." Neutral	"We feel all specialty care medical needs are taken care of." Somewhat agree	"We feel all specialty care medical needs are taken care of." Strongly agree
"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).”	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Strongly disagree	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Somewhat disagree	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Neutral	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Somewhat agree	"We are satisfied with the support staff at the provider’s office (i.e. helpful and responsive to questions, return phone calls, etc.).” Strongly agree

What would have been helpful in the process of transferring to ADULT SPECIALTY CARE that was not addressed?