1. Summary of National Family Needs Assessment
Megan Cote, NCDB Family Engagement Lead
Mark Schalock, NCDB Data and Evaluation Coordinator
nationaldb.org
The contents of this presentation were developed under a grant from the U.S. Department of Education #H326T However, those contents do not necessarily represent the policy of The Research Institute, nor the US Department of Education, and you should not assume endorsement by the Federal Government. Project Officer, Jo Ann McCann.

2. Overview of the Assessment
Background
Child and Family Needs and Strengths
Experiences with Agencies, Programs and Service Providers
Experience and Interactions with other Families
Local, State and National Supports

3. I. Background
Section I focuses on the recruitment of Families, number of responding families, and some demographics of their children.

4. Recruitment of Families
State Deaf-Blind Projects
NFADB
Charge Syndrome Foundation
NCDB
English and Spanish versions
On-line as well as paper-pencil versions
184 families responded to one or more items

5. Current Age of Children (N=184)
Youngest = less than 1 year of age
Oldest = 61 years of age
Average = 12 years 3 months
Birth – = 9
Pre-school age (3-5) = 38
Elementary school age (6-11) = 54
Middle/High school age (12-17) = 42
Young adults age = 25
Young adults ages = 10
Over = 7

6. Age of Diagnosis of Deaf-Blindness (N=182)
At birth = 54
Before 1 year old = 34
1-2 years old = 47
3-5 years old = 29
6-10 years old = 15
Older than 10 years = 2
Not sure = 1

7. Age when Connected to State Deaf-Blind Project (N=132)
At birth = 8
Before 1 year old = 14
1-2 years old = 28
3-5 years old = 38
6-11 years old = 21
Older than 11 years = 7
Don’t Remember = 16

8. Referral to State Deaf-Blind Project (N=63)
Who referred you to State Deaf-Blind Project
Part C Provider (22%)
School Personnel (19%)
The SDBP contacted me (13%)
Hospital/medical professional (11%)
Another parent or friend (10%)
I sought them out (8%)
Social worker/other program or agency (6%)
Don’t remember (11%)

9. II. Needs and Strengths
Section II focuses on the needs of children as well as the needs and strengths of families.

10. Child Needs (N=180 respondents; 485 responses)
What are current top needs you have for your child?
Most frequent responses
Communication system
Qualified knowledgeable personnel at local level
Social engagement
Health
Independent living and functional living skills
Supports in the home and community
Parent training to support our child

11. Areas of Child Needs
What are the current areas of need for your child?
Greatest areas of need
General/cut across (e.g. communication, qualified personnel, etc.)
Community engagement/supports
Home supports
Medical/Health care
Post-Secondary/Adult Life
School
A number of additional needs were mentioned by families. These included such things as: Dealing with Medical System, Housing, access to Brailled materials, General Development, an Intervener, Accessible Materials, Sensory Supports, Speech and Language Therapy, Toilet Training, Transportation, Auditory Supports/Hearing Aids, Networking with other children/families, Summer Camps, College and Feeding.

12. Family Needs (N= 154)
What do you most need information about? (In order of frequency)
Assistive technology use
Communication methods and instruction
Advocacy skills to support my child in school and the community
Impact of vision and hearing loss
Helping my child build social skills and friendships
Building a network of support for my child
Transition to adult life
Supporting my child with complex medical needs

13. More Family Needs What else do you most need information about?
Interveners in school
Dealing with challenging behaviors
Life of our child as an adult
Dealing with IEPs and assessments
Movement
Employment
Sibling support
Transition from early intervention to school

14. Family Strengths (N=124) Family characteristics and dynamics (n=123)
Our family is a strong team
Our adaptability, determination and patience
Love, humor and faith
Knowing and understanding our child
Being consistent
We allow our child freedom to explore
We focus on strengths and maintain high expectations
We include our child in all family activities
We celebrate successes

15. Family Strengths Our skills and abilities (n=102)
Taking care of educational and medical needs
Ability to advocate for our child
Ability to find resources
Ability to communicate with our child
Experience as educator(s) – teaching specific skills
Our ability (financial) to provide support
Development of external supports (n=12)
Connecting with other families
Having external supports

16. III. Experiences with agencies and service providers
Section III focuses on the various agencies and service providers families deal with in supporting their child.

17. Satisfaction with Service Agencies/Programs (N= 166)
State and Local
School District/Department of Education (n=154); 69% have had positive experiences
Part C Program
(n=97); 75% have had positive experiences
Developmental Disabilities
(n=84); 42% have had positive experiences
Vocational Rehabilitation
(n=48); 38% have had positive experiences

18. Satisfaction with Service Agencies/Programs
Other
Medical System
(n=130); 78% have had positive experiences
Public Health System
(n=60); 47% have had positive experiences
Kellen Keller Regional Representative
(n=56); 52% have had positive experiences
Parent Center
(n=38); 42% have had positive experiences
Other local, state and national agencies/programs
(n=43); 95%have had positive experiences

19. Educational Service Providers (N=162)
Educational Personnel
Teachers
Special Education Teacher (143), Teacher of the Visually Impaired (126), Early Intervention Teacher (120), Regular Education Teacher (106), Teacher of the Deaf or Hard of Hearing (105), Teacher of the Deafblind (37)
Related Service Providers
SLP (150), OT (142), PT (138), School nurse (104), O&M (94), Interpreter (33)
Paraeducators
Paraeducators (84), Interveners (46)
Administrators
School administrator (96)
District administrator (63)

20. Medical/Social Service Providers (N=162)
Vision/Hearing Professionals
Audiologist (150), Ophthalmologist (142), Optometrist (110)
General Medical Professionals
Pediatrician (145), Physician (141), Public Health Nurse (31)
Social Service Personnel
Social Worker (68)

21. IV. Experiences and interactions with other families
Section IV focuses on the experiences and interactions with family groups and other families.

22. Interactions with other Families (N=149)
Frequency of Interactions with Other Families
Of the 149 respondents:
74 (49.7%) never communicate with other families
53 (35.6%) communicated 1-2 times per month
5 (3.4%) communicated 3-5 times per month
17 (11.4%) communicated more than 5 times per month

23. Preferred Interactions with Other Families (N=152)
Means of Interaction
Of the 152 respondents:
112 preferred in person interactions
90 preferred private Facebook groups
69 preferred phone calls
69 preferred texting (& a few preferred )
About 25% preferred some form of on-line communication (Skype, Facetime, Google Chat, etc.)
Several respondents were not interested in communicating with other families

24. Experiences and Interactions with other Families(N=132)
Parent Groups and Advocacy Efforts
Of the 132 respondents:
69 indicated that there was a parent group in their state
40 indicated they were active in their state parent group
28 indicated that there wasn’t a parent group
46 did not know or did not respond
13 indicated that they were active in state and/or national advocacy efforts.

25. V. Supports
Section V focuses on family supports at the local, state and national levels.

26. Decision Making Supports (N= 156)
Who do Parents Rely on in Making Decisions (overall rankings in parentheses)
Themselves
Their own knowledge of their child (1)
Reading and self-study (3)
Experts
Service providers (Part C providers, teachers, physicians, etc.) (2)
State Deaf-Blind Project personnel (5)
Trainings and workshops (4)
Watching online videos (8)
Other Families
Parent of a child who is deaf-blind (6)
Local or national parent group (7)

27. Most Helpful Supports Generally (N=112)
Who has provided the most helpful supports
Other Families
State Deaf-Blind Project
CHARGE Syndrome Foundation
NFADB
HKNC
Usher Syndrome Foundation

28. Most Helpful Supports Specifically (N=112)
What has been most helpful
Connections to other Families
Conferences and Parent Weekends
Facebook Groups
Resources/information used in home, community, school
One on one assistance, TA, training, etc.
Advocacy for/support in obtaining services in school and the community

29. Most Helpful SDBP Supports (N=102)
Most Helpful State Deaf-Blind Project Supports
Parent workshops/weekends (45%)
One on one support to our family (26%)
Access to resources and information (25%)
TA to teams in school (23%)

30. Additional Comments (N=40)
Need more support groups for parents to connect and share (n= 13)
Need help navigating state programs and agencies – especially adult/community services and programs (6)
We need qualified personnel in our state: interveners and teachers (4)
We/I need more support from national organizations and projects (4)
Resources need to be easier for me to find (5)
Thank you for your supports/activities (8)