Family Survey (Adults)

Participant Number: K<Client ID>

Children/Family Survey

Opinions of Services and Supports
for Children with Disabilities and their Families in WashingtonState

Thank you for helping us by completing the attached questionnaire. Your opinions will make it possible to improve services and supports to children with disabilities and their families in WashingtonState. The results of this survey will also allow us to compare family satisfaction with similar information collected in other states. We expect that it will only take about 25minutes to complete this survey.

INSTRUCTIONS:

Note: If there is more than one child receiving services in your family, please answer the questions considering the person who is named on the letter you received. Some families may receive letters for more than one child.

/ For most questions, all you need to do is check the box that applies to you. All responses will remain confidential. Your answers will not affect the services and supports you are receiving. If you come to a question that you feel uncomfortable answering, skip it. However, for us to get complete information, it is very important that you try to answer each question as accurately as you can.
 / When you have completed the questionnaire, please return it to us in the enclosed pre-addressed and pre-stamped envelope. Please try to return the survey as soon as possible.
/ If you need help reading or understanding this survey, or if you need an interpreter, please call: Lisa Weber, Research Manager, DDD, at 1-888-700-8249

Again, THANK YOU!

Copyright © 2002 by the National Association of State Directors of Developmental Disabilities Services and Human Services Research Institute. All rights reserved. Permission to use or reproduce portions of this document is granted for purposes of the Core Indicators Project only. For other purposes, permission must be requested in writing from the authors.

Participant Number: K<Client ID>

Part 1:INFORMATION ABOUT YOUR FAMILY

Please answer the following questions about your family member with a disability.

Participant Number: K<Client ID>

a.)Does your child with a disability live at home with you?

1.Yes 2.No

Note: If you answered "no" to the question above, please stop here and return the survey.

b.)Is there more than one child with a disability in your household?

1.Yes 2.No

Reminder: If yes, please answer for the child listed on the letter you received.

c.)How old is this child? ______years

d.) What is the gender of this child?

1. Male2. Female

e.)About how much help does this child need with daily activities (such as bathing, dressing, eating)? (check one)

1. None3. Moderate

2. Little4. Complete

f.)Has this child been diagnosed with any of the following? (check all that apply)

1.Mental retardation

2.Other developmental disability

3.Mental illness (e.g. depression)

4.Autism

5.Cerebral Palsy

6.Brain injury

7.Seizure disorder/neurological problem

8.Chemical dependency

8a.Fetal Alcohol Syndrome (FAS)

9.Vision or hearing impairments

10.Physical disabilities

11.Communication disorder

12.Down Syndrome

13.Other disabilities not listed

f.2.) If this child has a diagnosis of mentalretardation, what level was specified? (check one)

1. NA, does not have MR

2. Mild

3. Moderate

4.Severe

5 .Profound

6. Don’t know or level not specified

g.)What is this child’s race?
(check all that apply)

1. American Indian or Alaska Native

2. Asian

3. Black or African-American

4. Native Hawaiian or Other Pacific

Islander

5. White

6. Other/Unknown

7. Two or More Races

8. Hispanic or Latino

Participant Number: K<Client ID>

Please answer the following questions about yourself.

Family Support Survey

h.)What is your age?

1. Under 353. 55 - 74

2. 35 - 544. 75 or Older

i.)How would you describe your health? (check one)

1. Excellent3.Fair

2. Good4. Poor

j.)What is your relationship to this child?
(check one)

1. Parent (biological, adoptive, or foster)

2. Sibling

3. Grandparent

4. Other (please describe)______

k.)Are you a primary caregiver for this child?

1.Yes 2.No

l.)What was the total taxable income last year of the primary wage earners in your household? (check one)

1. Below $15,000

2. $15,001 - $25,000

3. $25,001 - $50,000

4. $50,001 - $75,000

5. Over $75,000

Family Support Survey

As best you can, please answer the following question about your child’s support needs.

m.) Which statement most closely matches the level of support and assistance your child requires?

1. REMOTE - can be left unattended for extended periods of time, but requires access to a support person either via telephone or someone who visits the person, but not daily.

2. MONITORING - can be left unattended for several hours at a time (3 – 4 hrs) to engage in independent activities, but needs access to a support person daily for guidance or personal care assistance.

3. CLOSE PROXIMITY - can be left unattended for short periods of time (1 –2 hrs), provided that the environment is strictly structured and that a support person can respond quickly in an emergency situation.



4. ONSITE - cannot be left unattended. Requires a support person on the property at all times, at least during awake hours.

5. LINE OF SIGHT - cannot be left unattended. Requires a support personwithin the room at all times duringawakehours.

Family Support Survey

Participant Number: K<Client ID>

SERVICES AND SUPPORTS RECEIVED

Please check whether your family or your child with a disability is currently receiving any of the services or supports described below and whether you are authorized to receive the right amount of service to meet your needs.

yes, but

yes, but yes,i could

i need justget bydon’t

morerightwith lessnoknow

SSI Financial Support– your family receives SSI payments. 1a 1  1b 2 3
Other Financial Support– family receives money (cash, 1a 1  1b 2 3

stipends, vouchers, or reimbursement) to purchase items,

equipment, or needed services for your child with a

developmental disability.

In-Home Support– people are paid to come to your home to 1a 1  1b 2 3
provide assistance to your child with a disability.
Respite Care– someone takes care of your child with a disability 1a 1  1b 2 3
either at your home or elsewhere to give your family a break.
Early Intervention – your child is under age 3 and receives 1a 1  1b 2 3 services to enhance his/her development.
Transportation– someone arranges for specialized 1a 1  1b 2 3 transportationfor your child with a disability to go to community activities, medicalappointments, etc.
Specialized Services/Supports– your child with a disability 1a 1  1b 2 3
receives mental health care or other kinds of therapies (such as physical therapy, occupational therapy, speech therapy, or

recreational therapy).

Community Guide – DDD pays for a non-State employee 1a 1  1b 2 3

to help your family connect with available resources

in your community.

Foster Care – you are the provider of family foster care 1a 1  1b 2 3

services for this child.

Personal Agent – a personal agent provides information and 1a 1  1b 2 3 technical assistance to individuals with disabilities and their families who request additional help to identify different ways to meet personal needs and to negotiate the use of funding to purchase needed community services or supports

Part 2:QUESTIONS ABOUT SERVICES AND SUPPORTS

Please answer the following questions about services you currently receive from the Division of Developmental Disabilities. Check one response for each question. If a question does not apply to you, please check the last column.

INFORMATION & PLANNING / Always or Usually / Some-times / Seldom or Never / Don’t Know / na
1. / Do you receive information about the services and supports that are available to your child and family? / 1 / 2 / 3 / 4 / 5
2. / If you receive information, is it easy to understand? / 1 / 2 / 3 / 4 / 5
3. / Do you receive information about the status of your child’s development? / 1 / 2 / 3 / 4 / 5
4. / If yes, is this information easy to understand? / 1 / 2 / 3 / 4 / 5
5. / Do you get enough information to help you participate in planning services for your family? / 1 / 2 / 3 / 4 / 5
6. / If your family has a service plan, did you help develop the plan? / 1 / 2 / 3 / 4 / 5
7. / If your family has a service plan, does the plan include things that are important to you? / 1 / 2 / 3 / 4 / 5
8. / Do the staff who assist you with planninghelp you figure out what you need as a family to support your child? / 1 / 2 / 3 / 4 / 5
9. / Do the staff who assist you with planning respect your choices and opinions? / 1 / 2 / 3 / 4 / 5
10. / Does someone talk to you about the public benefits that are available to you? (e.g. food stamps, EPSDT, Supplemental Security Income, etc.) / 1 / 2 / 3 / 4 / 5
11. / Are the staff who assist you with planninggenerally respectful and courteous? / 1 / 2 / 3 / 4 / 5
12. / Are the staff who assist you with planninggenerally effective? / 1 / 2 / 3 / 4 / 5
13. / Can you contact the staff who assist you with planning whenever you want to? / 1 / 2 / 3 / 4 / 5
ACCESS & DELIVERY OFSUPPORTS / Always or Usually / Some-times / Seldom or Never / Don’t Know / na
14. / When you ask your case manager for assistance, does s/he help you get what you need? / 1 / 2 / 3 / 4 / 5
15. / Does your family get the services and supports you need? / 1 / 2 / 3 / 4 / 5
16. / Do the services and supports offered meet your family’s needs? / 1 / 2 / 3 / 4 / 5
17. / Are supports available when your family needs them? / 1 / 2 / 3 / 4 / 5
18. / Do families in your area request that different types of services and supports be made available in your area? / 1 / 2 / 3 / 4 / 5
19. / If yes, does either the state agency or provider agency respond to their requests? / 1 / 2 / 3 / 4 / 5
20. / If you have ever asked for services or supports in an emergency or crisis, was help provided to you right away? / 1 / 2 / 3 / 4 / 5
21. / If English is not your first language, are there support workers or translators available to speak with you in your preferred language?
What is your preferred language?
______/ 1 / 2 / 3 / 4 / 5
22. / If your child does not speak English or uses a different way to communicate (for example, sign language), are there enough support workers available who can communicate with him/her?
What is your child’s preferred language?
______/ 1 / 2 / 3 / 4 / 5
22a. / If you or your child consider yourself to be a member of a cultural minority, are Division of Developmental Disabilities staff respectful of your cultural beliefs and practices? / 1 / 2 / 3 / 4 / 5
23. / Does your child have access to the special equipment or accommodations that s/he needs (e.g., wheelchair, ramp, communication board)? / 1 / 2 / 3 / 4 / 5
24. / Do you have access to health services for your child? / 1 / 2 / 3 / 4 / 5
25. / Do you have access to dental services for your child? / 1 / 2 / 3 / 4 / 5
26. / Do you have access to necessary medications for your child? / 1 / 2 / 3 / 4 / 5
27. / Are frequent changes in support staff a problem for your family?
For which support staff is this a problem? (check all that apply)
Does
Not
YesNoApply
Case Manager
In-home support provider(s)
Community Guide
Other providers (specify)
______/ 1 / 2 / 3 / 4 / 5
28. / Are support staff generally respectful and courteous?
Specifically, whom? (check all that apply)
Does
Not
YesNoApply
Staff at the DDD office
In-home support staff
Community Guide
Other staff (specify)
______/ 1 / 2 / 3 / 4 / 5
CHOICE & CONTROL / Always or Usually / Some-times / Seldom or Never / Don’t Know / na
29. / Do you choose the agencies or providers whowork with your family? / 1 / 2 / 3 / 4 / 5
30. / Do you choose the support workers who work with your family?
Specifically, whom may you choose? (check all that apply)
Does
Not
YesNoApply
Case Manager
In-home support provider
Community Guide
Other providers (specify)
______/ 1 / 2 / 3 / 4 / 5
31. / Do you have control and/or input over the hiring and management of your support workers? / 1 / 2 / 3 / 4 / 5
32. / Do you want to have control and/or input over the hiring and management of your support workers? / 1 / 2 / 3 / 4 / 5
33. / Do you know how much money is spent by the Division of Developmental Disabilities on behalf of your child with a developmental disability? / 1 / 2 / 3 / 4 / 5
34. / Do you get to decide how this money is spent? / 1 / 2 / 3 / 4 / 5
COMMUNITY CONNECTIONS / Always or Usually / Some-times / Seldom or Never / Don’t Know / na
35. / If you want to use typical supports in your community (for example, through recreation departments or churches), do either the staff who help you plan or who provide support help connect you to these supports? / 1 / 2 / 3 / 4 / 5
36. / If you would like to use family, friends, or neighbors to provide some of the supports your family needs, do either the staff who help you plan or who provide support help you do this? / 1 / 2 / 3 / 4 / 5
37. / Do you feel that your child has access to community activities? / 1 / 2 / 3 / 4 / 5
38. / Does your child participate in community activities? / 1 / 2 / 3 / 4 / 5
39. / Does your child spend time with children who do not have developmental disabilities? / 1 / 2 / 3 / 4 / 5
SATISFACTION / Always or Usually / Some-times / Seldom or Never / Don’t Know / na
40. / Overall, are you satisfied with the services and supports your child and family currently receives? / 1 / 2 / 3 / 4 / 5
41. / Are you familiar with the process for filing a complaint or grievance regarding services you receive or staff who provide them? / 1 / 2 / 3 / 4 / 5
42. / Are you satisfied with the way complaints or grievances are handled and resolved? / 1 / 2 / 3 / 4 / 5
OUTCOMES / Always or Usually / Some-times / Seldom or Never / Don’t Know / na
43. / Do you feel that family supports have made a positive difference in the life of your family? / 1 / 2 / 3 / 4 / 5
44. / Do you feel that family supports have improved your ability to care for your child? / 1 / 2 / 3 / 4 / 5
45. / Do you feel that family supports have helped you to keep your child at home? / 1 / 2 / 3 / 4 / 5
46. / Overall, do you feel that your child is happy? / 1 / 2 / 3 / 4 / 5

Part 3: IN-HOME SUPPORT / RESPITE PROVIDERS

Instructions: The following questions ask about services received from an in-home support provider or out-of-home respite provider (e.g., Medicaid Personal Care, Respite Care). Please provide the following information about your in-home provider/out-of-home respite provider during Calendar Year 2004.

If you had more than one in-home provider/out-of-home respite provider last year, please answer the questions with respect to your last provider.

If you are currently using more than one provider, please answer the questions with respect to the provider you use most often.

If you did not use an in-home provider/out-of-home respite provider last year, please skip to Question 57.

47. / How long did it take to locate and hire your current in-home support / respite provider? / ______/ weeks
48. / How many providers have you had in the past year? / ______
49. / Is your current in-home support / respite provider related to your child? /  Yes /  No /  Don’t know
Always or Usually / Some-times / Seldom or Never / Don’t Know / NA
50. / Is this provider available to provide regular services during the hoursyou need him/her? / 1 / 2 / 3 / 4 / 5
51. / Does this provider deliver services in the way you want to receive them? / 1 / 2 / 3 / 4 / 5
52. / Is this provider capable of handling your child’s special care needs? / 1 / 2 / 3 / 4 / 5
53. / Are you comfortable with your child’s health and safety while under the care of this provider? / 1 / 2 / 3 / 4 / 5
54. / Do you believe that this provider will know what to do in case of an emergency while caring for your child? / 1 / 2 / 3 / 4 / 5
55. / Is this provider knowledgeable about your child’s disability? / 1 / 2 / 3 / 4 / 5
56. / Are you satisfied with the overall quality of care given to your child by this provider? / 1 / 2 / 3 / 4 / 5

Part 4: CASE MANAGEMENT / SELF DETERMINATION

INSTRUCTIONS: Your case manager provides a variety of services to you, including monitoring the needs of your family, authorizing you to receive paid services, and providing support to your family when needed. The following questions ask you about your perception of your case manager and the current case management system in WashingtonState. Please answer the following questions about the case manager currently assigned to you.

57. / How many times during the past year have you had contact (in person or by telephone) with your case manager? / ______times
58. / How long have you had your current case manager? / Less than 1 year
 / 1 – 2 years
 / MoreThan 2
Years

/ CASE MANAGEMENT /
SERVICE COORDINATION / Always or usually / Some-times / Seldom or never / Don’t Know / Does not Apply
59. / When you leave a telephone message for your case manager, is your call returned promptly? / 1 / 2 / 3 / 4 / 5
60. / Does your case manager seem to be knowledgeable about the service options offered by the Division of Developmental Disabilities? / 1 / 2 / 3 / 4 / 5
61. / Does your case manager seem to be familiar with the services available within your local community for your family / your family member with a disability? / 1 / 2 / 3 / 4 / 5
62. / Does your case manager seem to be knowledgeable about your family member’s developmental disability? / 1 / 2 / 3 / 4 / 5
63. / When you talk with your case manager, does he/she listen attentively? / 1 / 2 / 3 / 4 / 5
64. / Do you and your case manager work as a team to make decisions about your family member with a disability? / 1 / 2 / 3 / 4 / 5
65. / Does your case manager seem to understand the needs of your family in relation to your family member with a disability? / 1 / 2 / 3 / 4 / 5
66. / Does your case manager seem to understand the needs of your family member with a disability? / 1 / 2 / 3 / 4 / 5
67. / Does your case manager regularly ask you how your services are going? / 1 / 2 / 3 / 4 / 5
68. / Does the case manager regularly ask you whether your needs have changed? / 1 / 2 / 3 / 4 / 5
69. / Does your case manager seem to sufficiently monitor the quality of the services your family receives? / 1 / 2 / 3 / 4 / 5
70. / Does your case manager support you when you approach him/her with suggestions on how to best meet your family’s needs? / 1 / 2 / 3 / 4 / 5
71. / Overall, are you satisfied with the services your case manager provides to you? / 1 / 2 / 3 / 4 / 5

Part 5: SCHOOLS AND EDUCATION

/ SCHOOL PROGRAM / Yes / No / Don’t know / Does not Apply
72. / Is your child getting an education through:
a.) a public school
b.) a private school
c.) an authorized Home School Program
d.) a Hospital
e.) another Care Facility?
If your child is not in school, please explain briefly and then skip to Question 79. ______ / 1
1
1
1
1 / 2
2
2
2
2 / 3
3
3
3
3 / 4
4
4
4
4
73. / Does your child have a current Individual Education Program (IEP)?
If no, skip to Question 76. / 1 / 2 / 3 / 4
74. / If your child is 16 or older, does his/her Individual Education Program (IEP) include transition services to teach him/her skills that will be useful after he/she leaves school? (These services might include adaptive living skills training, mobility training, vocational training, or courses necessary to go to college.)
Skip this question if your child is under age 16. / 1 / 2 / 3 / 4
75. / If your child is 16 or older, does his/her Individual Education Program (IEP) include transition services specifically related to being prepared for a job after leaving school (for example, vocational training, higher education, job search skills)?
Skip this question if your child is under age 16. / 1 / 2 / 3 / 4
76. / Is your child attending school the same amount of time as non-disabled children of the same age?
If no, does your child’s Individual Education Program (IEP) indicate a shortened school day? / 1
1 / 2
2 / 3
3 / 4
4
Always or Usually / Some-times / Seldom or Never / Does not Apply
77. / In general, do you think your child’s educational needs are being met? / 1 / 2 / 3 / 4

Part 6: INFORMAL SUPPORT

/ INFORMAL SUPPORT / Yes / No
78. / Are you involved in or affiliated with a church or religious organization? / 1 / 2
79. / Are you involved in recreational, social or community organizations? / 1 / 2
80. / Do you have friends, family members, or neighbors who will help you provide support for your family member with a disability (when you need a break)? / 1 / 2
81. / Do you have friends, family members, or neighbors you can call when you need someone to talk to? / 1 / 2
82. / Do you have friends, family members, or neighbors who can step in to help during an emergency? / 1 / 2
/ DISABILITY-RELATED ORGANIZATIONS / Yes / No
83. / Are you involved in or affiliated with any disability-related organizations (such as Arc, Autism Society of America, Parent to Parent, Developmental Disabilities Council, National Association for Down Syndrome)? / 1 / 2

If yes, which of the following statements are true about your involvement in disability-related organizations?

/ DISABILITY-RELATED ORGANIZATIONS (cont’d) / True
For Me / Not True
For Me
84. / I have received information about my family member’s disability. / 1 / 2
85. / I have received information about resources or services for my family or family member. / 1 / 2
86. / I have received help getting services for my family member. / 1 / 2
87. / I have met people that I can talk to regarding concerns about my family member. / 1 / 2
88. / I have met people that I have become friends with. / 1 / 2

Part 7: YOUR COMMENTS

Thank you for taking the time to complete these questions. Please use the space below for any other comments you would like to make.