1. What is the Iowa Project for Deaf-Blind Services?

The Iowa Project for Deaf-Blind Services provides technical assistance through training efforts and the dissemination of information on innovative and best practices for purposes of educating infants, toddlers, children and youth who are deaf-blind, birth through 21.

2. What can the Project offer educators, families, and children?

The Project receives federal dollars via a grant application to provide technical assistance and staff development opportunities. Available services include:

• Technical assistance and consultation to educators, families and children based on individual needs and requests.
• Provision of staff development opportunities for teachers, paraprofessionals, and support service personnel.
• Stipends to families so they may attend the Iowa Parent-Educator Connection Conference.
• Dissemination of current information regarding deaf-blindness.
• Technical assistance and consultation activities from a parent coordinator who assists in supporting families and their children.

3. Who may request services?

• Families of infants, toddlers, children and youth with deaf- blindness.
• School district, area education agency or other agency personnel providing services to infants, toddlers, children and youth who are deaf-blind.

4. Do I have to pay for these services?

Services are provided at no cost to families, school districts, area education agencies, and other agencies requesting service.

5. Who is eligible for services?

Infants, toddlers, children and youth ages birth through 21 who are deaf-blind.

6. How is deaf-blindness defined?

It may seem that deaf-blindness refers to a total inability to see or hear. However, in reality deaf-blindness is a condition in which there is a combination of visual and hearing impairments along a continuum. Many children called deaf-blind have enough vision to be able to move about in their environments, recognize familiar people, see sign language at close distances, and perhaps read large print. Others have sufficient hearing to recognize familiar sounds, understand some speech, or develop speech themselves. The range of sensory impairments included in the term "deaf-blindness" is great.

Section 622 of the Individuals for Disabilities Education Act (IDEA) defines deaf- blindness as "children and youth having auditory and visual impairments, the combination of which creates such severe communication and other developmental and learning needs that they cannot be appropriately educated without special education and related services, beyond those that would be provided solely for children with hearing impairments, visual impairments, or severe disabilities, to address their education needs due to these concurrent disabilities." This definition includes all children birth through age 21.

Some people are deaf-blind from birth. Others may be born deaf or hard-of-hearing, but lose some or all of these senses as a result of accident or illness.

Still others may be born with both sight and hearing, but lose some or all of these senses as a result of accident or illness.

Again, it is important to note that the majority of learners who are deaf-blind have some residual use of either or both of the distance senses -- vision and hearing. Other learners may have no usable vision or hearing. Some may have additional challenges, including physical, cognitive, and emotional disabilities. Although learners who are deaf-blind are a heterogenous population, they all share communication challenges and the potential isolating effects of combined vision and hearing losses.

Deaf blindness is not the sum total of a vision loss plus a hearing loss. The combination of these sensory losses, to whatever degree, or in combination with additional disabilities, create highly unique challenges. Vision and hearing interrelate to connect people with the world and are the primary avenues through which most people learn.

7. Do the terms deaf-blind and dual sensory impaired mean the same thing?

Yes, in Iowa the terms mean the same thing. However, it is important to mention that when one uses the term "dual-sensory" that it specifically refers to the vision and hearing senses.

8. Who qualifies as being deaf-blind (dual sensory impaired)?

Beside the definition mentioned in IDEA, the Project has developed guidelines to assist individuals in the decision-making process. These guidelines are found in the Deaf-Blind Census Form.

9. What is the Deaf-Blind Census?

Each state is required to maintain a list of eligible children who meet the requirements of being deaf-blind. This Census is required by federal law. The maintenance of this census is tied in part, to the amount of federal dollars the Project can receive by grant application to provide technical assistance and staff development opportunities for educators and families.

10. Who can refer children to the Census?

Anyone using the census form can refer a child to the Project. Educators, family members, community agency personnel, health care professionals, and others are prime sources of referrals. Families usually learn about the census and Project through the school system or Area Education Agency.

11. Does a multi-disciplinary team need to label a child "deaf-blind" before referring him or her to the Census?

No! A child at the local level can be referred to the census with a non-categorical or other disability label.

12. Should a child who wears glasses and a hearing aid and is in a general education classroom be referred to the Census?

No! The IDEA definition states that a child must have both an auditory and visual impairment, the combination of which causes such severe communication and other developmental and education problems that he/she cannot properly be accommodated in special education programs either for the hearing impaired or the visually impaired child.

Referrals to the census should only be made for those students receiving specially designed instruction and support services from special education.

13. Should a child who is multiply disabled and functioning as if they were deaf (but hearing tests show there is no hearing loss) be referred to the census?

No! The child must have at least a 30-45 decibel hearing loss as measured by pure tone average (PTA) for the better ear.

14. Is parent permission required for referral to the Census?

Not by Federal law, but it is preferred practice in Iowa for families to be included in the decision-making process to refer. It is important they understand what benefits are available to them as well as school personnel with a referral.

15. As a parent, why should I agree to place my child's name on the Census?

So families can be assured that their son or daughter receives appropriate services from educators and other service personnel.

Education for an infant, child or youth with deaf-blindness needs to be highly individualized; the limited channels available for learning necessitate organizing a program for each child that will address the child's unique ways of learning and his or her own interests. Assessment is crucial at every step of the way. Sensory deficits can easily mislead even experienced educators into underestimating (or occasionally overestimating) intelligence and constructing inappropriate programs.

Helen Keller said, "Blindness separates a person from things, but deafness separates him from people." This potential isolation is one important reason why it is necessary to engage the services of persons familiar with the combination of both blindness and deafness when planning an educational program for a child who is deaf-blind. Doing so will help a child or youth with these disabilities receive an education which maximizes her or his potential for learning and for meaningful contact with her or his environment. The earlier these services can be obtained, the better for the child.

16. Once placed on the Census, can a child's name be removed?

Yes! The Census is updated on a yearly basis. If a child has moved out-of-state or no longer qualifies as being "deaf-blind," he or she can be removed from the Census.

Infants and toddlers can be referred to the Census on a conditional basis particularly if vision and hearing tests are inconclusive or if the child is not vision and hearing impaired at the present time but, has a known syndrome which will eventually lead to vision and hearing loss.

17. What about confidentiality of Census information?

This reporting process completely complies with Federal Regulation 99.31, which permits the disclosure of information about persons on the Census to federal, state, and local agencies without parental consent.

18. How is this program funded?

This is a federally funded program. I.D.E.A., Part C, Section 622; Title 34 CFR, Part 307.

19. Who can I call if I have questions about the Census or need to access assistance from the Project?

By emailing, writing or calling:
Steve Maurer, Project Director
Grimes State Office Building
Des Moines, Iowa 50319-0146
515/281-3576
E-mail: smaurer@ed.state.ia.us
-or-
Susan A. Brennan, Deafblind Consultant
Iowa Department of Education
Grimes State Office Building
Des Moines, Iowa 50319
515-281-3954
E-mail: susan.brennan@ed.state.ia.us

Other Iowa Agencies:

Iowa Braille School

Iowa School for the Deaf

Department for the Blind

Iowa Vocational Rehabilitation

Other Local Resources:

Valerie Findley, Family Consultant
Iowa Department of Education
Grimes State Office Building
Des Moines, IA 50319
515-281-7145

Roger Hoffmann, Facilitator
University Hospital School
100 Hawkins Drive
Iowa City, IA 52242
319-356-8518
roger-hoffman@uiowa.edu

National Resources:

DB-Link (The National Information Clearinghouse on Children who are Deaf-Blind)

Deaf-Blind Perspectives

Iowa's Systems Change Project for Deafblindness

Helen Keller National Center for Youths and Adults Who are Deaf-Blind (HKNC): 516-944-8900 (headquarters); 516-944-8900 (technical assistance center)

National Family Association for Deaf-Blind: Headquarters (1-800-255-0411)