supporting parents of newly diagnosed deaf and hard of hearing infants: the implementation and...

Supporting Parents of Newly Diagnosed Deaf and Hard of Hearing

Infants:

THE IMPLEMENTATION AND IMPACT OF Parent Links

Generously Funded by The California Endowment

A program of the California Coalition of Agencies Serving the Deaf and Hard of Hearing, Inc.

Providing Families With Infants (0-3 Years) who

have a hearing Loss with Links To:

*Services

*Programs

*Information

*Parent-To-Parent Support

Parents are the single most

critical factor in the education

and future of their children.

“The feeling of connection may be one of life's sweetest moments-

when someone understands you, really understands you, because

they have been there”.

Connecting with Families

Parent Link Consultants Personalities

Listen and Care

Share and Seek Information

Collaborate and

ARE Professionals

Tools for Success Active Listening, Grief and Communication

Skills Indicators of Cultural Competences Principles of Family/Professional

Collaboration Part C of IDEA and Calif. Early Start IFSP Process Principles NHSP Resource Development Documentation and Record Keeping

PARENT LINKS ACTIVITES

1. Intake

2. Essential Links

3. Intensive Case Management

4. Medical Home

5. Referral Other Agency

6. Early Intervention Services

7. Research

8. Find or Develop parent groups

9. Presentations/ Trainings and Workshops to Parents

10. Collaboration with EI and Medical Home

SHORT-TERM PARENTAL OUTCOMES

1. Increased Knowledge2. Decreased Isolation

3. Increased Services

4. Increased Participation

5. Increased Coping

6. Increased Confidence

7. Increased Bonding

8. Improved Parental Negotiation Skills

ULTIMATE GOALS

1. Improved Health Conditions

2. Language Acquisition

3. Improve life/Academic Outcomes

4. Improved Interface With The World

LONG-TERM FAMILY OUTCOMES

1. Improved Family Dynamics

2. Improved Family Advocacy

3. Increased Communication Skills with Child

Parent Links Program Objectives

Identify 500 resources and contacts including medical, educational, social, deaf related services and devices, support and other information for families for the 58 counties of California.

Parent Links Program Objectives

Provide Family Culture presentations or trainings to providers within the Early Start system.

Parent Links Program Objectives Attend conferences, meetings and trainings in

order to promote the program, provide

educational resources to parents and providers,

and represent the experience and needs of

families with deaf and hard of hearing infants

and toddlers.

Parent Links Program Objectives

Provide intensive case management

(ICM) to families with infants (0-3years).

Parent Links Program Objectives

Ensure that the case managed families will be

connected to a medical home and/or be

enrolled in educational services.

Parent Links Program Objectives

Develop a train the trainer curriculum

whereby the PARENT LINKS

Consultant will train Key Parent Links

Volunteers.

Parent Links Program Objectives

Develop 50 fact sheets in English and

Spanish on a variety of topics related to

hearing loss and educational issues of

interest to families and providers.

Parent Links Program Objectives

Conduct regional meetings or events for families throughout the State.

Parent Links Program Objectives The Parent Links program will be

recognized by local, state and federal agencies as the representative of families with infants and toddlers who are deaf or hard-of-hearing.

Parent Links expertise will be utilized during consideration of implementation, enhancement or change of program and services impacting on families in the Early Hearing Detection and intervention system.

Evaluation Purpose

Explore impact of novel parent support program

Improve focus and delivery of Parent Links

Evaluation Methods Unstructured qualitative in-person staff

interviews

Semi-structured qualitative telephone client interviews

Case reviews

Mailed & telephone client surveys

Evaluation Challenges/Limitations Data burden concerns on already

overwhelmed parents

“Post-only” approach

The failure of mailed surveys

Move to staff-administered telephone surveys

Parent - To - Parent Support Parents clearly need and desire support

and education

When asked how they felt when they first learned their child was deaf or hard of hearing, parents’ brought up two themes:

The powerful, negative emotional impact of the news, and

A lack of support or helpful information from professionals around them at the time

Emotional Impact All parents interviewed discussed the

enormous emotional impact of learning that their child is deaf or hard of hearing

“I could see from the reactions that

something was very wrong. [When I left after the test] I had become very lost in myself. I became deaf and blind. I walked right into traffic. My husband pushed me out of the way.”

“[I was] shocked and devastated. It was really devastating, a worst-case scenario … heartbreaking. This was my first child and I blamed myself.”

“Relieved and overwhelmed. We had gone down a lot of speculation about what was wrong, so it was a relief to get an answer. But the answer opened a whole other can of worms. We were overwhelmed.”

Lack of Information or Support Many parents mentioned that

professionals present when their child was diagnosed as deaf or hard of hearing were neither informative nor supportive

At a point when parents needed help the

most, often they found the professionals around them either did not have information they needed or made the situation worse

“I had been consistently advised by doctors … that there was no need top work on my daughter’s communication ability since it was severely limited and other disabilities needed attention.”

“The nurses…wouldn’t help us at all. They kept saying he’s never going to hear, he needs surgery. They wouldn’t answer our questions.”

Overall Assessment of PL by Clients

Parents are extremely positive about Parent Links and the impact it has had on them and their children

“No one else said you are going to be OK, [my child] is going to be OK.”

“Parent Links has been very positive and extremely helpful to my family … It brought us over a pivotal time in our [child’s] life and in our education.”

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7.4 14.8 14.8

63

010203040506070

Figure 1: Overall Importance of Parent Links

%

PoorFair

GoodExcellent

%

3.7 7.418.5

70.4

010

203040

50

60

70

80

Figure 2: Overall Quality of Parent Links Services

%

“I learned being deaf in and of itself doesn’t have to limit you … deafness is a big part but not the only … not the defining part of who you are.”

“It is important to know our kids are OK just the way they are and there are other parents going through the same thing … I never saw this stuff before. How many parents leave the hospital with a deaf child?”

Reducing Parents Sense Of Isolation

Connecting with Other Parents A crucial aspect of reducing parent’s sense

of isolation was clearly connecting them with other parents of deaf and hard of hearing infants

“We learned we are not alone. She hooked us

up with other families. It was important to hear other people’s experiences. All we wanted to know is that they can be happy, normal children. Parent Links helped us greatly with ‘Oh, my gosh!’”

11.13.7 3.7

22.2

59.3

0

10

20

30

40

50

60

Figure 3: Sense of Isolation Reduced by Parent Links

%

Meeting other parents with deaf or hard of hearing children or meeting deaf or hard of hearing adults is a key element to helping parents of newly diagnosed infants cope

“It was very important and helpful to see how

other parents are faring. Meeting parents of deaf children and deaf adults to see how they dealt with it was very important.”

“[Going to events] helped me by being able to see young and old adults happy in their world of deafness. We have met successful adults and that gives me hope to continue to mix and introduce [my child] with peers and role models that are deaf.”

Emotional Support Emotional support is the first thing

parents talk about when they discuss Parent Links, a fact captured in one quote: “Emotional support is 95% of what Parent Links has done for me.”

“The most important thing is mostly [my consultant] just being there.”

“She’s been there emotionally, to listen to me, acknowledging I’ve got all these feelings. Someone who doesn’t have a child with a handicap doesn’t understand.”

Common Ground A key element to being able to

understand and provide the needed support stems from the fact that all of the consultants have been through the same experience

“That [she] shared her own experiences helped, that her own [child] is grown and has a family, raised our own awareness that our [child] can be OK.”

“It was very supportive and good to hear from someone who’s been through it.”

Education To a great extent this is because they

have no knowledge about the condition or how to deal with learning their child is deaf or hard of hearing

A clear strength of Parent Links is the vital information they provide parents about the condition and how to deal with it proactively and effectively

“Before Parent Links I was not aware of all my options or specific areas that are so important for deaf kids.”

“The educational material on the Parent Links website and other websites [she] sent me have been very helpful.”

“[My consultant] hooked us up with a lot of information.”

““[My consultant’s] been a book of knowledge to me.”

Empowerment All parents reported Parent Links has

empowered them to help and advocate for their child and that their child is doing better because of this empowerment

“I am no longer confused or lost. I have direction and feel empowered. My [child] now is really doing well and has lots of interventions specific to her.”

“Because of Parent Links I am better prepared to advocate. I am [my child’s] best advocator. [My consultant] has really empowered me … Without her I don’t know that I would be as far along now.”

Connections with Professionals Connecting parents with relevant

professionals is another critical aspect of what parents said Parent Links provides

“At the picnic we got to meet this highly respected interventionist from [our community] … it was very useful to speak with him.”

“We asked for the opportunity to observe the alternative programs to address the communication and educational needs for a deaf child. The visits to several programs were arranged for us by Parent Links.”

Implications Findings show that early support

and education is vital for parents of newly diagnosed deaf and hard of hearing infants, helping them cope and empowering them to more effectively advocate for their child

This can only lead to better health and life outcomes for these children

Challenges Parent Links has been

unsuccessful to date in acquiring funds to continue

This appears to be a factor of parent support services for specific disabilities being outside existing funding streams of federal and state dollars and deafness being too rare to be a health priority for the big health-oriented foundations