May 09 FLorida Special Needs Newsletter

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Date: Tue, May 12, 2009 at 11:05 AMSubject: May 09 FLorida Special Needs Newsletter

*************WE'VE MOVED***************

Florida SNAP, The Special Needs Advisory Partners & The Preventive Family Support Services

Main office: 8201 s Road, Suite 1000-56, Plantation, FL 33324 Main www.FloridaSNAP.com E- mail: info@... May 2009

In This Issue: Press Release: Funding For PFSS Parent Training in Private Schools, Summer Camp Check List, Mortgage Meltdown, Focus on Family, Calendar Of Events and more...

Don't Forget to look for us in an article in the June 2009 Weston Lifestyle Magazine, written by Adriene Fern, parent, advocate and writer. Thanks Adriene!

Summer Camp

Checklist

As you gear up for camp this summer we wanted to share some important questions caregivers should be asking their camp directors to ensure the safety of their special needs children while under their supervision.

What is the camper to counselor ratio? Does this number include volunteers under the age of 18?

What are the criteria for volunteers and camp counselors? Are there background checks and personal references?

How are special dietary, medically fragile or unique needs of each child visually and clearly identified by counselors, volunteers and other staff?

If medication is administered what is the protocol for administering, transporting and monitoring it during field trips or offsite play?

What is the nursing, medical or triage area protocol for injured children?

Who is a parents point of contact for questions, concerns, updates on their child?

How is information communicated back to parents on upcoming events, changes, or other concerning news?

Are shadows allowed to accompany your child at camp?

Will any other campers be assisted by animals such as dogs that may be harmful, scary or upsetting to your child?

What are the approaches to discipline or conduct that the camp enforces?

Is there available assistance with needs such as toileting, eating, transferring or other activities of daily living that your child will need accomodations for?

What is their refund policy if the program is not a fit for your child?

Mortgage

Meltdown

For most families home is where there heart is. Home is their single largest asset. Home is a safe place for children with special needs to live, learn, grow and be cared for.

Since the beginning of the year our agency has been flooded with calls from parents trying to understand where they stand in light of all the many confusing changes to their mortgages, finances and overall financial well being.

Parents are asking if there are better rates, when the value in their homes will increase again, how much of their retirement, savings and credit should they be dipping into to keep things afloat.

For each family the right choice is different. We have made answering these questions and educating our families on how to position themselves a priority.

If you are not sure how the recent economic changes affect your family, your mortgage, your business and overall financial well being, and benefit eligibility, please call our agency for an intake.

To aide us in assisting you, please have a working knowledge of your current mortgage, home equity lines of credit interest rates, outstanding loan amounts, most recent tax return, and approximate credit score.

Press

Release

RELEASED:

May 1, 2009

Contact: Philipp, CEO, Preventive Family Support Svs Phone: PFSS Main Office:

E-mail: Info@...

On-line: www.PFSSFL.org

FOR IMMEDIATE RELEASE

PRIVATE FUNDING GRANT AWARDED TO THE PREVENTIVE FAMILY SUPPORT SERVICES TO BRING SPECIAL NEEDS RESOURCES AND PARENT TRAINING TO PRIVATE SECTOR SCHOOL AND CONSUMERS

The Preventive Family Support Services, is a not-for-profit division of Florida SNAP, The Special Needs Advisory Partners. In 2009, PFSS was awarded parent training grants to fund their work with parents whose special needs children attend local private schools and organizations. This initiative will give private schools looking to meet the growing needs of their parent/caregiver population access to free, on site parent training modules presented by qualified PFSS Trainers.

Colette Cronin, a parent advocate and mother of a parentally placed child with special needs was noted as saying “Our private schools are doing all they can to meet our needs, but assistance from the community is critical to keeping as much money in the budget as possible for improved educational opportunities and expanding services for our special needs children. Free training would be a blessing because most parents I advocate for don’t know where to turn for answers on issues outside of school linesâ€

For PFSS, parent training is just the first step in helping private school families gain access to information on topics such as obtaining benefits and entitlements, navigating the SSI maze, understanding federal government income guidelines, obtaining guardianship and concerns centered around the long term legal, financial and quality of life obligations caregivers will have now and into the future. The initiative doesn’t end with parent training, additional quality of life resources like parent support groups, referrals to respite care providers, and help with qualifying for benefits are all part of the plan PFSS outlined in the grant proposal.

Parents who chose to parentally place their special needs loved ones in a private school shouldn’t be left in the dark, when it comes to accessing benefits and entitlements, they deserve the same access to services and support families engaged in the public school system do.

To date, PFSS has provided helped hundreds of families through their informative parent training workshops. With collaboration from the private sector, they hope to help more families seeking support for their special needs loved ones, one workshop at a time. For more information on PFSS 2009 workshop offerings for your school or agency, contact The Preventive Family Support Services today.

If you are considering becoming a host site for our free parent training workshops please visit us online at www.FloridaSNAP.com and learn more about our different workshops or call our office at or

.

Workshops on topics such as:

Guardianship at the age of majority, Navigating the SSI Maze, Introduction to Family Support Services Benefits, Special Needs Trusts & Wills, ABC's of IEP's, Creating Your Letter of Intent, Introduction to PFSS for MSC's, and more.

May 2009 Parent Training Calendar

Click our link to view a complete listing of 2009 workshop offerings or call our office to schedule a free parent training workshop for your school, SEPTA, support group or family

Sat. May 16th

10 AM

Special Needs Trusts and Orientation to

Where There's A Will, There's A Way Grant Program

Sunrise, FL

RSVP for details

Tues. May 19th

6:00 PM

Guardianship At Age Of Majority

Sunrise, FL

RSVP for details

Sat. May 30th

11 am

Dads Monthly

Support Group

At Artesia in Sunrise

Topics vary, not diagnosis or age specific. All dads, grandpas, male caregivers welcomed.

RSVP a must to Rick@... or call for directions and details

If your agency or support groups are interested in bringing free parent training to the families associated with your agency, please call our office for an updated listing of our workshop offerings .

FOCUS ON FAMILY

Each month we bring you a story about a family with a special needs loved one in hopes of sharing thoughts, insight, joys and struggles from their perspectives with our subscribers. This month we're sharing some thoughts from Dineen's mom who spoke to us about raising a teenager and young adult diagnosed with Autism.

Dineen comes from an athletic and active family. Her mom is an avid tennis player who designed an implemented a tennis sports programs for individuals on the Autism Spectrum. Dineens mom has always enjoyed her work in the community even though Dineen isn’t a big fan of tennis! Dineen, now 21 was only recently diagnosed with Autism after her mom read McCarthy's book. Looking back, she realized that many of the characteristics explained in the book were mirrored in Dinnen, but she had been mis-diagnosed for years.. Luckily at the time her mom had her diagnosed by the Cody Center in NY, Dinnen was still in High School which meant that access to certain services and transition plans could be made available to her in the short time she has left before aging out of the school system.

Growing up Dineen didn't have many friends, there were acquaintances from school or other programs she was involved in, but no one who she really connected with. That was hard for her mom as she raised her because she wanted her daughter to have every opportunity in life and that included friends, and a social life. Overtime Dineen went through a lot of the same teenager woes most families experience, yet how the family communicated about them, helped Dineen through them and the toll it took on their family as a whole was very interesting. Dineen and her brother go to the same high school and his friends know Dineen, but her socializing with them and even her brother is limited, right now they are at different places in their lives and each one is very unique and different. Over the last year or so Dineen had become friendly with a young man who was developmentally

disabled and they liked each other very much. Talking to Dineen about what was appropriate behavior and what was expected of her and her friendship with this young man was a conversation she and her mom had to have. Over time they began spending more time together and enjoyed each others company. With continuing talks of becoming boyfriend and girlfriend and being in love, Dineens mom was careful to protect her daughter but excited to have her enjoying some of the normal experiences life brings. Abruptly, their friendship ended and Dineen was heart broken. Her mom was there for her and it was difficult, yet Dineens mom knows that over her lifetime Dineen will need some level of care and someone to look out for her. Although Dineen can, with supervision, get dressed, shower, make lunch and maintain herself and be responsible for certain tasks, her mom has decided to being the process of

legal guardianship for her, knowing that if Dineen was put into a situation where she had to weigh out options and consider the long term maintenance of her health, well being, finances and other quality of life issues, she may not act appropriately or take into consideration all the factors.

For now, Dineen will remain living at home with her mom, step dad and brother, but ultimately, her mom would like to consider adult day services and possibly even transition Dineen into a home environment where she can have a life with her peers, and be more independent, but safe. Making these decisions and getting services and on waiting lists is a big job to do. Her mom regrets not considering the transition planning needs for Dineen sooner, but knows that over time, everything will work out. Her encouragement to other families is not to be afraid to get a diagnosis, and not be overwhelmed by statistics and the diagnosis. With modifications, communication and collaboration between everyone in your family, things can work out quite well. Raising a teenager on the spectrum isn’t easy, but more often then not, her mom feels she may find it harder then

Dineen does, because she compares it to a typical teen and wishes she had more friends, a social life and other experiences that Dineen doesn’t seem to really notice are that different!

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