Supporting Parents with Disabilities

A new initiative of the Oklahoma Developmental Disabilities Council and Sooner SUCCESS

Allies: OKDHS Child Welfare and Developmental Disability Services, OK Department of Health, OK ABLE Tech, Oklahoma Advocates Involved in Monitoring (TARC), OK Department of Rehabilitation Services, OK Disability Law Center, Center for Learning and Leadership at the University Center for Excellence in Developmental Disabilities, OK Family Network, Parent Advocacy Corps, Oklahoma Autism Network, & the National Center for Parents with Disabilities

OPC Statewide Conference

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What we knew when we began this project Parents with cognitive disabilities feared having their

children removed. Professionals were often unsure how to evaluate these

parents and implement appropriate support Agencies had no means of tracking which parents were

identified as having a disability Maternity units often had questions about sending

newborns home with parents who had disabilities In home service providers were unsure if their role

included helping their client’s parent and if so, how to do that effectively

How many Oklahomans with disabilities are currently parents Number: 96,800 (Parents with a disability and a child < age 18)

Most frequent type of disability: Mobility issues (47,100)

2nd most frequent type of disability: Cognitive issues (35,900)

2/3rd are married and living with their spouse or partner

Most frequent ethnicity: White (78,200)

Only 13,100 are receiving SSI

1/3 live below federal poverty level; another 1/3 live 100-199% FPL

Source: Kaye, H. Steven. Current Demographics of Parents with Disabilities in the U.S. Berkeley, CA: Through the Looking Glass, 2012

Legal Guidelines – “Make no assumptions based on disability” In 2015, HHS in conjunction DOJ issued clarification guidelines: Per the

Title II ADA, “No qualified individual with a disability shall, by reason of the their disability, be excluded from participation in or be denied services…of a public entity or be subjected to discrimination by such entity.” This applies to the child welfare and court systems among others.

“Individuals with disabilities must be treated on a case - by - case basis consistent with facts and objective evidence . Persons with disabilities may not be treated on the basis of generalizations or stereotypes.”

There are mandatory federal regulations regarding the obligation of schools to accommodate parents with disabilities. The U.S. Department of Justice’s website provides detailed federal regulations regarding accommodating individuals with disabilities under the ADA (Americans with Disabilities Act). http://www.ada.gov/reg2.html

OPC Statewide Conference

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Doesn’t this place children at risk?

“This does not mean lowering standards for individuals with disabilities; rather, in keeping with the requirement of individualized treatment, services must be adapted to meet the needs or a parent or prospective parent who has a disability to provide meaningful and equal access to the benefit.”

Sometimes the risk to a child’s safety or health cannot be eliminated by reasonable modifications. Here, HHS and DOJ insist that evidence of this must be documented with individualized assessment and objective facts.

A closer look – understanding the life experience of a parent with a disability

Special Education – little emphasis on social skills, low expectations/social promotion

Inclusion – every time I try & fail something bad happens Professional help – something is wrong with me that must

be fixed Potential history of trauma, poor parent models

Results: Low self esteem, trust issues, fear of consequences if they try & fail

Identification – parents don’t come with labels

They probably won’t self identify – they’re good at “coping”

Use the TLG behavioral checklist Don’t assume laziness or lack of interest – start by

offering support. Check for understanding – don’t be fooled by ok’s and

head nods

OPC Statewide Conference

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Relationship is everything

For a parent with a lifetime of trauma and fear to overcome - You will need to

consistently demonstrate that you are different by showing respect and approval.

Show approval for their parenting efforts – even if they’re not perfect Build their confidence - find something the parent is doing right & let them

know.

Don’t just listen – use their ideas to show this is a joint effort.

Be human – admit you’ve made mistakes too.

Build on what they do well if you want to offer parenting suggestions.

With their permission -- Try to draw in their natural support system – the people they already love & respect – consistency will help the child & extend the support network of the parent.

Be sure the end result is empowerment not dependence. The goal is for them to feel confident in their own skills & comfortable partnering with you on their child’s education.

The first step would be to discuss with the parent what works best for him or her.

This could be done during an initial meeting with the parent, or possibly included in questions for the parent on a school intake form when the student enrolls.

For example, “Do you need any special accommodations to help us better communicate with you, or to make it easier for you to participate in your child’s education?”

Asked all parents since it’s not always obvious which parent may need some accommodation. Not all parents with disabilities are comfortable being openly identified as having a disability or requesting special accommodations.

OPC Statewide Conference

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Accommodation ideas – for parents that have visual impairments Instead of printed materials, offer an alternate format such as Large Print or

Braille. With the increasing availability of email, many parents now prefer to have the information sent to them via email so they can use a text reader or other specialized equipment at home. A good source for information about making printed materials more accessible is the National Federation of the Blind: http://www.nfb.org/nfb/Resources.asp?SnID=202569912

If a parent is new to the school, offer the parent a chance to learn the school layout. Guide them through the school facilities. Typically, let the blind person lightly hold on to your arm and stay ahead of the parent –don’t push them ahead of you. This way the parent can feel what’s coming such as a step or turn in the path.

Accommodation ideas – for parents who are deaf or hard of hearing Many deaf and hard-of-hearing parents use a variety of specialized phone

equipment in addition to texting or email. They may use a video-phone or a TTY/TDD. You don’t need to have one of these devices to have a phone conversation with the deaf parent. From anywhere in the U.S., dial 711 and you will reach a “Relay Operator.” Give the Relay Operator the deaf parent’s phone number, and the operator will walk you through how to talk back and forth with the deaf parent.

For meetings, provide a sign language interpreter. When working with an interpreter, always face and talk to the deaf person – not the interpreter. One resource for finding a qualified interpreter is the national Registry of Interpreters for the Deaf: http://www.rid.org/

Most hearing-aids amplify all the sounds in the room. If you are meeting with the parent(s), find a smaller quieter room – or at least find a corner of the room that may be a little less noisy.

Accommodation ideas – for parents with physical disabilities. Make sure meeting and event spaces are accessible for those with mobility

limitations. This includes not only ramps and wide-enough doorways, but also restrooms, cafeterias or other school facilities that any parent may expect to use.

Parents with mobility limitations may use a local paratransit service as their primary mode of transportation. Paratransit services often have a wide window of time in which riders are picked up or dropped off. This may result in the parent being unavoidably late for a scheduled appointment or needing to wait to be picked up long after the appointment is concluded. If the lack of accessible transportation prevents a parent from attending a meeting, consider using telephone or email as a way of communicating directly with the parent.

OPC Statewide Conference

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Accommodation Ideas – for parents with intellectual disabilities (DD or LD)Parents with intellectual or cognitive disabilities may have difficulty fully understanding written materials sent to the parent or sent home with the child. (Ex: Their child’s homework assignment, announcements about planned school activities and meetings).

Some parents may appear lazy or disinterested in their child’s education because they don’t follow-through on requests from the school or don’t seem to be participating in their child’s schoolwork or other activities.

Recommend an after school program or tutor if homework is a struggle.

Consider a regularly scheduled time to meet with the parent (e.g., 5-10 minutes on a particular day of the week) to help the parent stay on track with how their child is doing and any follow up actions they need to do.

When you need to communication critical information:

Expect the exchange to take longer. Allow time & find a quiet space.

If it’s safety related - Give them a heads up so they can bring another set of ears.

Sometimes asking the parent a question in more than one way can help with understanding or let you know how well the parent has understood you.

Follow-up phone calls may help if you aren’t sure the parent is understanding.

For routine information

Provide small amounts of information, not too much at once.

Use creative repetition - Think about the Early Bird program – provide support, practice together, send home to practice more.

Be concrete, hands on or visual whenever possible.

Use repetition, but not always from you/verbal.

OPC Statewide Conference

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You can be their mentor – let them volunteer in your classroom

Talk about a parenting skill – seed the ideaModel it – demonstrateHands on – Let them try it with you (offer

positives before 1 suggestion)Watch them use the skills in a natural setting or

activity (offer positive + 1 suggestion)Ask another staff or family member to reinforce

skill or topic

If your student has a parent with mental illness Children may be affected by their parent’s mental illness, particularly if the

untreated illness is severe, highly unpredictable and/or results in the parent being frequently absent due to hospitalizations or other treatments.

This may affect a student’s attendance, performance or interaction with other students.

As a teacher, you can be supportive to the parent and the child by being nonjudgmental and assuring confidentiality. If a parent discloses that he or she has a mental illness, you can ask them how they feel it affects their child(ren) and what might be helpful to support the child.

A nonprofit Australian organization (Children of Parents with Mental Illness) has a website specifically designed for teachers and school staff. http://www.copmi.net.au/professionals/professional-fields/schools-education.html

Disability Awareness

One of the best ways to promote disability awareness of parents with disabilities is to invite a parent with a disability to talk with your studentsabout living with a disability as part of planned disability awareness days or curriculum.

It is usually more helpful if the parent comes fairly early in the school year in order to address questions.

Create greater awareness by ensuring that parents with disabilities are invited and accommodated in routine school functions and classroom activities open to all parents. This can range from classroom presentations on careers to school-wide functions such as sports events, parent-teacher conferences, bake sales, afterschool activities and class field-trips.

Be aware of your visuals…. Do they include people with disabilities?

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When they get upset …..

If you push on a trigger you will get a reaction. Usually tears, anger, or defensiveness.

Focus on the frustration underneath. They are feeling inadequate.

Be empathetic, encourage them to talk about why they are frustrated or upset.

Draw in their natural supports if appropriate to help them or you.

Let them know it’s OK. No parent is perfect.

Once they are calm, back up and try another approach to the problem. What can WE do differently to address the issue.

If possible, try to get them to explain the trigger. Your message, “I care about you, something I said or did upset you and I don’t want to do that again. Can you help me understand what I did wrong?”

Want to learn more? Save the Date!

In partnership with The National Center for Parents with Disabilities (www.lookingglass.org) and the Oklahoma Developmental Disabilities Council, Sooner SUCCESS is proud to host 2 day training events in Enid and Shawnee on Supporting Parents with Disabilities

June 20 & 21, 2016 – Autry Technology Center, Enid

June 23 & 24, 2016 – Gordon Cooper Technology Center, Shawnee

No Cost, Lunch on your own each day, Time 9 a.m.- 4 p.m., Registration required at www.Eventbrite.com

What we’ll be covering…..

Why this matters—legal implications for professionals. Effective accommodations and ways to engage parents with

disabilities. Working with parents who have cognitive disabilities. Effective strategies for home based programs. How to use Person-Centered Tools with families. Parent and child trauma and coping strategies when an infant is

removed from his/her parent. Supporting parents with disabilities in Native American communities.

OPC Statewide Conference

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Who should attend?

Self-advocates Parent education staff Head Start and early intervention staff Childcare providers School staff Allied Health professionals (OT, PT, SLP) DHS staff (all sectors) Independent living center staff

Who should attend, con’t

Judges, family court and legal service staffCommunity resource and referral staff Native community members Healthcare service providers Behavioral health service providers Assistive Technology staff Parent mentors

Questions?

Lisa Simmons, Project CoordinatorSooner SUCCESSLisa-simmons@ouhsc.edu580-603-1580

Conference Highlights

1. Why this matters—legal implications for professionals.

2. How to support parents with disabilities.

3. Utilizing adaptive equipment to support infant care.

4. Working with parents who have cognitive disabilities.

5. Effective strategies for home based programs.

6. How to use Person-Centered Tools with families.

7. Parent and child trauma and coping strategies when an infant is removed from his/her parent.

8. Supporting parents with disabilities in Native American communities.

Who Should Attend:

Self-advocates

Parent education staff

Head Start and early intervention staff

School staff

Allied Health professionals (OT, PT, SLP)

DHS staff (all sectors)

Independent living center staff

Family court and legal service staff

Community resource and referral staff

Native community members

Healthcare service providers

Behavioral health service providers

Assistive Technology staff

Practical Strategies for

Supporting Parents with Disabilities

2 Locations — Same Training Max Capacity: 100 per site

Check in Time: 8:30 a.m. Conference: 9 a.m.—4 p.m. each day

No cost, but registration is required

June 20 & 21, 2016—Enid, OK

At the Autry Technology Center - 1201 W Willow Rd, Enid, OK 73703

Register for Enid training at: http://supportingpwdenid.eventbrite.com

June 23 & 24, 2016—Shawnee, OK

At the Gordon Cooper Technology Center—1 John C Bruton Dr, Shawnee, OK 74804

Register for Shawnee training at:

http://supportingpwdshawnee.eventbrite.com

Funding provided by

Sponsored by

Breakfast provided by:

Certificate of Participation provided for participants. Lunch on

your own each day.

Training Objectives: 1. To understand the essential child care domain areas and their corresponding

subtasks necessary for the assessment process. 2. Participants will begin to develop their own “visual history” regarding the numerous

way in which parents with physical disabilities can care for young children. 3. Participant will be able to identify various performance factors that influence a

parent’s ability to care for their young child. 4. Participant will understand the key transitional subtasks to all domains and their

importance to developing effective adaptive equipment. 5. Participants will understand the impact of culture (ethnic, disability, family, etc.) on

effective intervention.

Space is limited. Registration is required. CEUs will be available. June 20 & 21st, 2016 at the Autry Technology Center in Enid, OK. Check in at 8:30 a.m.

Training 9-4 Register online at: http://abctrainingenid.eventbrite.com

June 23rd & 24th, 2016 at the Gordon Cooper Technology Center in Shawnee, OK. Check in at 8:30. Training 9-4 Register online at: http://abctrainingshawnee.eventbrite.com

Presenter: Christi Tuleja, M.S., O.T./L., is a licensed occupational therapy who has been a key member of Through the Looking Glass’s staff since 1991 providing intervention, conducting research, developing and managing programs and training professional around the country. She is the key developer of the only assessment tool designed specifically for parents with physical disabilities - Occupational Therapy Early Care Performance Assessment for Parents with Physical Limitations or Disabilities. She trains professionals nationally regarding parents with physical, cognitive/intellectual disabilities and blindness and has published a number of chapters and articles on early care adaptive equipment and intervention. She performs Occupational Therapy assessments of parental early care functioning for family court and child dependency systems around the country and has been an expert witness in such situations. She has over 25 years of experience in working children and parents with disabilities as well as infant mental health intervention and is certified in sensory integration assessment and intervention.

Training for Practicing and student OTs:

Baby Care Assessment and Intervention for Parents with Physical Disabilities.