Program targets Latino families

November 30, 2010 by cpehrson

For the past four years, Latino parents of children with special health care needs have been working directly with professional trainees from the URLEND program, learning more about the medical needs of their children.

The URLEND, (Utah Regional Leadership Education in Neurodevelopmental Disabilities) program has provided an opportunity for their trainees to meet regularly with a group of Spanish speaking parents at a medical clinic that provides care to underserved women and children with special health care needs.  The parent support group meets to be instructed and receive information about many areas related to living with a child with special health care needs. URLEND trainees share information in their area of professional medical expertise.

The South Main Clinic is located in the central part of Salt Lake City.  A substantial number of families seen at this clinic speak no English, Spanish being the most common language. URLEND trainees have an opportunity to work directly with these families in their own environment , presenting all materials in Spanish. An interpreter facilitates communication between the trainees and the parents when needed.

Both trainees and parents benefit from these meetings.  Parents gain a greater understanding of their child’s medical condition and can receive direct answers to their medical questions in their own language.  Trainees gain an understanding of the cultural and language barriers that many Latino families face and learn how important it is to remove those barriers in order to improve health care services.

URLEND trainees have presented on a variety of topics, including language development, hearing, genetics, dental, nutrition, speech therapy, occupational therapy, autism, and Down syndrome.

URLEND educates and prepares professional trainees to become leaders in maternal and child health to improve the systems of service in state departments of health and other health care professions.

URLEND is a multi-state collaborative program with the Utah State University-Center for Persons with Disabilities (CPD); the University of Utah-Medical Center-Department of Pediatrics; the Utah Department of Health-Children with Special Health Care Needs (CSHCN) Bureau; Utah Family Voices; Primary Children’s Medical Center; the UCEDD’s Family Voices, and CSHCN programs in ID, MT, ND, WY, and UT.

Note: This is the sixth in a series of blog posts summarizing presentations made by CPD staff members in late October and early November. They attended the 2010 conference for the Association of University Centers on Developmental Disabilities. Those of you who can stop by our building can check out the research posters in the hallway leading to the CPD’s southwest door.

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Project improves early referrals and services for young children with ASD

November 29, 2010 by cpehrson

A young child receives services in the Up to 3 classroom.

Young children with autism will now have a better chance of being identified and receiving the appropriate services sooner than ever before in Utah.

A pilot project at the CPD set out to find ways to increase the number of early referrals for young children exhibiting symptoms of autism spectrum  disorder (ASD), increasing their chances for early diagnosis and services.

Symptoms of ASD begin before the age of three years, but many children do not receive a final diagnosis until much older.  This delay means that children with ASD might not get the help they need as soon as they need it.  According to the Centers for Disease Control and Prevention (CDC), current research shows that early intervention treatment for children with autism can greatly improve their development.

The Utah ASD Development Project began launching a public awareness campaign aimed at early intervention providers, parents, child care providers, doctors, and the general public.

The campaign consisted of surveys conducted with parents and doctors.  Responses indicated that most doctors were not discussing ASD concerns with parents, and that little to no ASD or developmental screening was regularly occurring.  Learn the Signs/Act Early materials , developed by the Center for Disease Control and Prevention, were then distributed to doctors, community programs, and put into local newspapers.  Early intervention staff were trained on signs of autism to watch for as they worked with infants and toddlers, and ASD questions were added to their program intake paperwork .

The results of the project are impressive.  During the first year of the project, more  than twice as many young children at the Up to 3 Early Intervention program were referred for ASD testing.  The average length of time from referral to services was reduced from 12 months to 3 months.

The ASD Project developed several recommendations for early intervention programs that would give young children a greater chance to increase their development through early detection, diagnosis, and services. These included adding ASD questions during initial meetings with parents and having staff screen for ASD symptoms during ongoing assessments.  Also recommended were providing inservice training to staff on identifying Red Flags of autism and teaching them effective ASD interventions.

The impact of this project will greatly improve the outcomes for children with autism  for years to come.

The Utah ASD Systems Development Project was funded by the Utah Department of Health, through the Maternal and Child Health Bureau.

Note: This is the fifth in a series of blog posts summarizing presentations made by CPD staff members in late October and early November. They attended the 2010 conference for the Association of University Centers on Developmental Disabilities. Those of you who can stop by our building can check out the research posters in the hallway leading to the CPD’s southwest door.

Class increases understanding of people with disabilities

November 24, 2010 by cpehrson

IDASL students having a lively discussion.

When the Interdisciplinary Disability Awareness and Service Learning (IDASL) class meets on Friday afternoons, there is a wonderful mixture of students from several different disciplines and individuals with disabilities and their families.

Together, these students are having a unique experience learning about one another and sharing their experiences.  The goal of the IDASL program is for their students to understand more about people with disabilities and what challenges they might have to face across the life span. Students will be able to use this knowledge to become strong advocates for those with disabilities in their professional lives.

Dr. Judith Holt, Director  of IDASL,  works with a team of professionals from the CPD to provide a wide array of experiences for the IDASL students.

Students have an opportunity to have a hands-on learning experience at different community programs that serve individuals with disabilities. They choose the  programs that reflect their own interests and support the requirements of their college discipline.

As they work face-to-face with individuals with disabilities of all ages, from birth to adulthood, they get to know them as people, not just as people with disabilities.  As one IDASL student put it, “Instead of focus(ing)  on disabilities, let’s focus on abilities.  Focus on the person–everything is about the person, bettering their life, helping them feel like they are doing something, feeling fulfilled.”

An important part of the IDASL experience is to participate in interactive seminars presented by USU faculty and professionals, helping the students understand the real issues faced by individuals and their families and brainstorming how to resolve them.  As those with disabilities and their families share their personal experiences, students gain an understanding and respect for the challenges that they face.

Students also have an opportunity to participate in disability-related research during the two semesters.  One  IDASL student commented on the research experience that he had, “What I learned will help me be a better collaborator with people in and out  of my discipline.”

Participating in the IDASL program builds bridges of understanding and improves the lives of the trainees and people with disabilities.

Note: This is the fourth in a series of blog posts summarizing presentations made by CPD staff members in late October and early November. They attended the 2010 conference for the Association of University Centers on Developmental Disabilities. Those of you who can stop by our building can check out the research posters in the hallway leading to the CPD’s southwest door.

Conversation starter: research encourages young children to talk

November 23, 2010 by JoLynne Lyon

Here is a sample page from one of the UTELL books.

A USU research project combined reading, writing and photographs into a parent-child activity to boost language and literacy. What’s more, it helped families work on goals laid out in their Individualized family service plans.

These individual plans include priorities the family has for a child who is receiving early intervention services. The Using Technology for Emergent Literacy and Language program was developed by researchers at the Center for Persons with Disabilities. It encouraged parents and children to make books together, taking and using photographs in the child’s natural environment. Sometimes, a family’s priority wound up the subject of the home-made book.

Among the study’s findings: Mothers in the UTELL group interrupted their children half as often as the mothers whose children received early intervention without the UTELL program. They also responded to their child’s questions more than twice as often—while children in the UTELL group asked nearly three times as many questions.

The project also helped families to communicate about difficult subjects. For example, one family made a book about bath time—something the child resisted. “Baths aren’t her favorite, but she doesn’t cry,” a parent said after they made the book together.

“We were able to deal with situations that are difficult to him,” said another parent.

photo of a sample page showing a toddler in a hat. "Put on your hat," the next page reads.

The home-made books show a child in her natural environment, doing everyday things.

Note: This is the third in a series of blog posts summarizing presentations made by CPD staff members in late October and early November. They attended the 2010 conference for the Association of University Centers on Developmental Disabilities. Those of you who can stop by our building can check out the research posters in the hallway leading to the CPD’s southwest door.

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Employment curriculum helps those with disabilities in developing countries prepare for jobs

November 22, 2010 by cpehrson

Employment missionaries provide training in the Philippines

An international project is opening the doors to employment for individuals with disabilities in developing countries such as the Philippines, Peru, and the Dominican Republic, to name a few.

A three-member team of CPD employees and the Latter-day Saint Charities have been working together to develop an employment training curriculum that will help each participant develop a plan to secure future employment and ensure greater self-reliance and productivity.  The curriculum is geared towards persons in wheelchairs, but can be adapted for those with other disabilities.

People with disabilities are often denied access to education and income, although they have the same talents and capacity to become productive citizens.  The Moving Forward Workshop is a tool to help  build greater confidence and skills in those with disabilities so they can reach their employment goals.  The four-hour workshop is action-based and leads participants to take one or more major action steps towards employment.

It is important to educate and include individuals with disabilities in employment training to help lift them out of poverty and into the mainstream of society. This need is especially critical in countries whose total population is struggling economically.

The CPD team met with key people and agencies in several countries this past year and have  established contacts that will hopefully lead to training opportunities worldwide.

For more information about this employment curriculum, you can contact Marilyn Hammond.

Note: This is the second in a series of blog posts summarizing presentations made by CPD staff members in late October and early November. They attended the 2010 conference for the Association of University Centers on Developmental Disabilities. Those of you who can stop by our building can check out the research posters in the hallway leading to the CPD’s southwest door.