The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter

CALENDAR
Wed:11/12 @ 6 pm Garden City, NY Guardianship in NYS. An overview workshop for parents and caregivers. For location and detailed information RSVP to (516) 521 1099
Thursday 11/20 @ 12 pm Garden City, NY. Our core workshop: Addressing the long term legal, financial and quality of life issues families with special needs children and adults face. For location and detailed information RSVP to (516) 521 1100.
Thursday 11/27
HAPPY
THANKSGIVING


Tues 12/2 @ 5 PM Garden City, NY. Protecting benefit eligibility: A focus on special needs trusts, wills and legal family planning. For location and detailed information RSVP to (516) 521 1100.


PFSS Parent Training & Provider Training Courses
The Preventive Family Support Services is a 501c3, Not-for-profit division of the Special Needs Advisory Partners and is dedicated to bringing free, educational parent and provider trainings to schools, support groups, lectures,PTA's and our local community. If you would like to schedule a workshop, please call our main office to set up a meeting to discuss the group ypu'd like us to present to.
WORKSHOP SERIES
“Securing the long term quality of life for disabled individuals” Our core workshop and critical first step introduction to families addressing many areas of concern. Topics include information on understanding federal government benefits, navigating the SSI maze, addressing the legal and financial concerns of families with special needs children and adults, the importance of a properly drafted last will and testament, creating a letter of intent, aging out of the school system, finding support groups and lay advocates and the HIPA Act and it’s impact on the health care decisions of disabled individuals. Workshop runs approx 1:30 min



“Understanding benefit eligibility guidelines-Applying for OMRDD services in NY”

A workshop designed to introduce families to the benefits and entitlements that are offered to individuals with a formal diagnosis through OMRDD, The Office Of Mentally Retarded and Developmentally Delayed Persons in NYS. This workshop explains who and hat DDSO’s are and how they help, it defines the role of an MSC and advocates. It covers misconceptions of the “Medicaid” and “Medicaid Waiver” programs and helps families understand that benefit eligibility is NOT always based on income, but can be based on diagnosis. We address the importance of obtaining and securing eligibility, keeping eligibility and how even for families earning an above average income, there are services and programs that money can’t buy that loved ones must remain eligible for. Workshop runs approx 1 hr.


“An overview of Guardianship in NYS” this workshop explains the concept of becoming guardian of your own child with a disability at age of majority. We discuss the pro’s and con’s while we remain neutral and supportive of a families choice. We discuss how to choose a proper guardian, considerations when living as an elderly disabled individual, alternative housing opportunities, and the actual filing and surrogates court process entailed when acquiring guardianship. Workshop runs approx 1:30 min



"A Helping Hand For MSC's" Introducing Medicaid Service Coordinators and their agencies to PFSS and the resources we can provide to their consumers. This brief introduction helps MSC's identify specific needs of consumers that PFSS and SNAP can train and assist them with. MSC's who would like to participate in our helping hands program get weekly updates with articles, information, events, and training materials as another resource to provide their consumers. Workshop runs approx. 45 minutes





“Creating Your Letter of Intent" This workshop is by invitation only and is offered to families who have come through the process of securing their legal documents. Having the Letter of intent without securing legally the security of lived ones is offering false security. Our workshop is an interactive exercise where we help our families create their special needs loved ones' handbook. Topics include, transfer of critical and vital information, future planning for your loved ones' quality of life, on boarding a guardian to the real day to day care your loved one needs, documenting ideals for your loved ones' as they age, feelings on health, dating opportunities, religion, sex life, housing opportunities, finances and more. Workshop takes place over 2 days for 4 hours each session.

"Legacy Giving" Doing well by doing good. The basics behind tax favorable and philanthropic giving. Leveraging your assets and estate plan as a way to create a lifetime of care and consideration for a person, organization, or foundation. This workshop is done for individuals and families as part of their estate planning process. It has also been presented to philanthropic benefactors invited by non profit organizations as part of aligning their vision for continued support, and creative legacy gifting opportunities. Presentation time varies.



“The ABC’s of IEP’s”, The Americans With Disabilities Education Act Allows disabled individuals access to a free, fair public education. Our workshop addresses the importance and distinction between private vs in district evaluations, What to look for in an IEP (Individualized Education Plan), understanding the diagnosis and it’s prescribed care in a educational facility, what to do if your childs Individualized Education Plan is being “broken”, a parents rights to mediation and advocacy in the school districts, legal intervention methods, private placement schools and educational/living facilities. Workshop runs approx 45 min

"Planning For Today’s Alternative Lifestyle Families" When it comes to family matters, many of the legal, financial and quality of life considerations that apply to same sex couples can be confusing. Understanding how to protect your loved ones in this special needs situation can be confusing and complex. Addressing concerns now and in the future concerning children and their safety along with ensuring their emotional and physical well being is important for every family. Topics include guardianship of children, purchasing real estate and owning joint assets, the importance of wills and trusts, Health Information Privacy Act and allowing life partners to make critical health and legal decisions on their partners behalf, pension protection strategies, employer benefits, and retirement planning for same sex couples. Workshop runs approx 1:30 min.

For more information on any of these topics please call our main office and schedule a consultation. All workshops are copywrighted and presented by trained staff members of the Preventive Family Support Services.
xxx The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter

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GUARDIANSHIP
For many parents, making decisions for children with special needs is a lifelong commitment. A Parents goal is always to take actions toward ensuring their loved ones health, well being, safety and ability to be cared for and age with dignity and respect. In order for parents to maintain their decision making authority in the lives if their loved ones, some may have to obtain legal guardianship of their own children as they reach the age of majority.

This can be a foreign concept to many, since caring for their children have become second nature to them. Many find out the hard way that they are legally locked out of the decision making process when they try to act in a situation and are denied information or other privlileges they once easily accessed. Some examples of these situations are when making health care decisions, advocating at school for their children, making legal decisions, and in all financial matters.
Parents may find their once willing doctors, not so willing to share information on a patient who has turned the age of majority, or their childs school unwilling to discuss her report card or IEP with mom and dad becuase the student is 19 and an adult.

There are different forms of guardianship and not all children with special needs should have guardians, but a good majority should and as parents who care for their children seek solutions to this dilemma, they should be aware of their rights,or lack there of , and their childrens rights, which are ever increasing with age, regardless of a diagnosis.

For help understanding more about Guardianship proceedings where you live and to discuss the pros and cons of guardianship for your loved one, attend on of our upcoming workshops or call our main office to schedule an orientation.


FOCUS ON FAMILY
Each month we look to bring you inspirational stories from our families. Each of them have unique, wonderful and loving children with special needs. This month we bring you our interview with Peter, a single dad raising his son MarcAnthony on his own since MarcAnthony was a baby. Peter is an amazing dad, hard working father, and is dedicated to providing the best care and every opportunity available to his son. Peter is an EMT for the NY Fire Dep't. His son MarcAnthony was diagnosed at birth with Cerebral Palsy, developmental delays, Asthma and is legally blind. We knew his story would serve as an inspiration to single parents raising special needs children everywhere. Thanks Peter!

Peter &
MarcAnthony


Question: Tell us about the people in MarcAnthony’s Life:

Peter: I get a lot of help from my mother, sister and my nephew. They are very supportive of me and Marc and love us very much. They have been there through it all and if anything ever happened to me, I know they would be there for him 100%. When I want to get away for the weekend to refresh my mind and have some down time they will stay with Marc and I feel comfortable with the level of care they can provide him and it gives me peace of mind.

Question: What are some of the pressures you feel as a single parent?
Peter: At times I feel overwhelmed but I can’t let those feelings take over. What I do every day is for Marc's best and as long as I take good care of him, we will be all right. Since he was a small baby his mother has had no contact with him and takes no part in the joy of sharing his life. She has left this responsibility up to me, and I do all I can to fend for Marc's rights as a special needs child. At this point I really feel that Marc is better off with me instead of with his mother because she should naturally want to be a part of his life, yet, she chooses not to be there for him.
Question: Tell us about a typical day at your house
Peter: A normal day starts at 5 am with me getting up for work and then getting Marc ready starting at 5:30 am . I have to get him cleaned up and dressed with his backbrace, and then I have to put him into his wheelchair. My mom comes to make breakfast and I feed him and spend time with him before school so by 6am I'm feeding him breakfast and between 6:20-6:30am I'm out the door to be at work by 7:30 am . Every morning before I go I make sure that Marc has all his school stuff in his school bag and has his jacket on and he is ready. By 7:15 am my mother takes him down on the elevator (if it is working) to meet the school bus by 7:30am . Then Marc is at school until 3pm and usually by 4:15 pm Marc is home and I'm home shortly after. We go over what went on at school and then it’s time for dinner.

Question: What do you and MarcAnthony do at home? What things does he like to get into?

Peter: When he is home from school Marc is playing, watching tv and being a little kid. He does not get any home work but I reinforce the things he learned during the day to make sure he spends time studying and so I know what’s going on at school. Marc loves interactive toys, games, tv, music .going outside, swimming in the pool. He is very smart for a child with special needs.
Question: What are some of the challenges raising your son who is growing into a young man?
Peter: Giving Marc a bath is very hard since I live in an apartment I do not have room for special equipment to lift him. I have to lift him myself and put him in the tub to bathe him and lift him out to dry him in the bedroom. To stay on track, I try to do this every night between 7:00 to 7:30 pm . As he gets older and heavier it is tuff, but I am strong and he need me to do this for him. When Marc gets sick his cold triggers his Asthma which takes a lot out of him. If he is getting sick he needs me and I would have to stay home and treat him with his asthma meds. Usually after a few treatments, time with me and some rest my mother can stay with until he is 100% so I don't have to miss work a lot. Needless to say I do not get a lot of chances to take vacations because most of my vacation time is used on Marc when he gets sick. I do enjoy scuba diving and have a time share I try and get to. I have friends I am close to who know me and Marc and enjoy spending time with is and really support me as a dad.
Question: What are some of the challenges you have faced as a parent that other parents might be going through?
Peter: I think hardest thing I had to deal with over the year is the not knowing. Where to find the information needed to help me and my son has never easy. There are not many support groups where we live and the ones we have found are at times that I can not make.
Any advice for single parents and parents in general raising special needs children?
Get informed! I think the best thing to do is to ask your child school about programs, get a social worker to help you and talk to as many resources as you can. Get connected to other parents and find ways to be involved with networks of information.