Tuesday, March 24, 2015

Ice Cream Social



Ice Cream Social

This Saturday! 3/28/15

1-3 p.m.

Burch Creek Mercantile

3920 Washington Blvd.
 
Support, connect, & make a friend!

A parent advocate will be there for IEP/504 questions.

 

Friday, March 13, 2015

Respite Provides Relief for Families of Children with Disabilities

Article by Jeanette Pascoe
-Mother of a child with Autism, Lennox-Gastaut Syndrome, and an unconquerable spirit


Many Utah families who have children with disabilities are struggling, barely surviving their day-to-day routines. Their children require much different care than "typical" children. It commands more time, more energy, more money, and more emotion.


Some examples of special needs within families can be g-tube feedings, bathing, dressing, lifting, medications, difficult behaviors, sleep disorders, shunts, specialized diets, sensory processing issues, visual impairments, learning delays, brittle bones, bleeding disorders, attention deficit, seizures, breathing disorders, muscle disorders, and difficulty with fine motor or gross motor skills. There are many other disorders and difficulties families face. Often, families cope with multiple special needs and on a minute to minute basis.


As families of children with special needs, we love our children. We would do anything to help them get better. They are a part of us. They belong to us. They are precious.


YET...


There are times when we are exhausted, when we haven't slept, we are sad, we are angry, we have spent all our money, and we just don't know if we can keep going.


Reality hits. Real questions must be confronted. Am I capable of doing this day and night every day with little or no breaks? Will my marriage survive? Will my other children have what they need? If I get help, will it break our budget?


There is HOPE.


Take five to ten minutes to call DSPD if you are a parent or guardian of a child with special needs in Utah. That is what I did eleven years ago. That call has elevated my marriage, helped my children live normal lives, facilitated me coming out from survival mode, removed a major financial strain, empowered me to give back to my community, and ultimately, helped my child with special needs live a healthier, higher quality life.

Applying for Utah Disability Services and Respite

Division of Services for People with Disabilities (DSPD)

To apply, call 1.877.568.0084

What is DSPD Respite Care?
"Respite care is care provided by a trained person that temporarily relieves parents or caregivers from the day-to-day care they provide to the individual with disabilities. It can be provided in the family’s home, in the home of the respite provider or in a specialized facility, depending on the needs and preferences of the family or individual."
-DSPD Webpage on Services


Once you call DSPD, your child's case will be assigned to an intake worker. This person will work with you, guide you through the process, and answer your questions.


You will be asked to provide a needs assessment, a little about the child's social history, and a release of information.


Collect the following for your child's Needs Assessment:
  • Documentation: birth certificate, social security card, and guardianship papers (if they are relevant).
  • For ages 6 and under, obtain and provide a developmental assessment.
  • For ages 7 and above, obtain and provide a psychological evaluation. This evaluation must have been completed within the last five years by a licensed psychologist.
  • Any medical records which are relevant to the disability.
  • Diagnosis. If the diagnosis is related or medical, obtain and provide an ICD9 code from your child's doctor. (For example, if the diagnosis is "Autistic Spectrum Disorder," the code would be 299.0.)
Once a child's application and intake process is complete, eligibility is determined. If the child qualifies, they are placed on the DSPD waiting list. This list is considered based on need, not on the order of intake.


Are you wondering if you should apply?

If you are considering reaching out for help, you should call DSPD. You should especially call if your child's special needs are difficult to manage and if they are taking a toll on your family. I wasn't sure if I should apply, too. I thought, "I can do this. I'm strong. I'm capable." Even though those thoughts are true, you will have to consider the long lasting special needs and how they will effect your child, you, and your family. I even thought that there are others who have circumstances more difficult than mine. That may be true as well, however, there are services that my child truly needed. The eligibility process helped us to determine what level of services she would need.


Some parents may be concerned that receiving government service, such as respite, make their child ineligible to serve in the military. In most cases, a child with any disability in their records will disqualify them from serving in the military, not just the reception of respite or other government services. It is better to obtain a diagnosis and services for your child early, so that he or she has a higher chance of developing, progressing, and living a higher qualify of life.


While on the Waiting List

The waiting list is based on need. You should call again if needs have changed with your child, if your contact information has changed, or if you would like to check on your child's waiting list status. Be sure to include accurate information. Remember to include all of your child's special needs.


Each year, the amount of funding for DSPD services is granted by the Utah State Legislature. Many families of children with special needs lobby at the Capitol each year to propel forward the understanding of special needs and funding. With these efforts, it would be an incredible accomplishment for the state to serve more families. In turn, these families would have burdens eased and would be able to contribute to their communities as well as to the economy. The state would be wise to increase funding for DSPD services in order to avoid some of the higher costs of state care facilities.

Once My Child is Approved to Receive Respite

This is an amazing day. The hours and types of service your child can receive will be determined. Your child will be assigned a case manager who will help with any questions about respite and how to manage your child's services. Typically, you will be given the option of using a state contracted company who could send individuals to your home to help with your child's needs. You may also be given the option of using a state contracted financial service to cover the cost of you hiring your own workers. They would require a background check. Some families choose to have a combination of the two. Other services may be offered depending on eligibility, such as daycares or summer programs.


As you bring individuals into your home, your family may need to adjust to someone being there. Set clear expectations for those working with your child. Train and retrain on every important detail of your child's care. It is beneficial to have a plan for what you will do with your time, such as getting to the grocery store without needing to take your child, getting some sleep if you are sleep deprived, spending time with other family members who do not always get one-on-one attention, or doing something for yourself that you would not normally be able to do.


Receiving assistance in caring for your child may bring feelings of loss or even of guilt. Remember that these feelings are normal and will hopefully subside as you adjust to someone else providing some of the care your child needs. Remember that it is for the benefit of your child, you, and your family.

Thursday, March 5, 2015

IEP and 504 Q&A: Online Facebook Discussion

Put the "I" in IEP.

Online Facebook Discussion on IEP's and 504's

Monday, March 9th, 10-11 a.m.
Discussion comments at www.facebook.com/familiesofsuperkids
The more families we have, the better! Come ask your questions on our Facebook page this Monday. Kim Schneider, Parent IEP Coach at Utah Parent Center will be participating and answering questions.

Tuesday, March 3, 2015

IEP and 504 Discussion Cancelled

Our event on IEP's and 504's originally today at 1 p.m. is being rescheduled due to our presenter having a family emergency.

Monday, March 2, 2015

Hogle Zoo Offers Classes for Children with Special Needs

Kids classes for children with special needs (autism and visual impairment, to be specific) at Hogle Zoo are being offered this year. The classes need to be successful in order for the zoo to feel the need to do more than just a pilot run. Below is a link for the program brochure highlighting all available activities at the zoo, as well as the class registration page. In the brochure, you'll want to focus in on page two (right after the cover page) for the details on these special needs classes, which are under the "Zoo Just for You" section.

Brochurehttp://www.hoglezoo.org/wp-content/uploads/2012/11/Program_Brochure_2015.pdf