Learning that your unborn baby has Down syndrome can be very difficult to hear. This unexpected news may generate a wide range of emotions and unanswered questions. F.R.I.E.N.D.S. is here to assist you as you prepare for the birth of your new baby. Our Parent Liaisons can provide Peer to Peer, in-person visits or calls, that give you the support and guidance you need, and if you wish we can help you to connect with other parents who have received a prenatal diagnosis. To request a visit, send an email to firstname.lastname@example.org or call anytime (813)245-2782.
NEW PARENTS – In addition to our Peer to Peer visits we offer our F.R.I.E.N.D.S. Parent Packets. The packets are free and provide vital Down syndrome and special needs information from national and local agencies. Included is a free copy of the book “Babies with Down Syndrome, A New Parent’s Guide” and cute onesie and a bib for your baby.
F.R.I.E.N.D.S. Parent Packets are available in English/Spanish and a bilingual Parent Liaison is available upon request.
For Parent Packets send your request to email@example.com or call (813)245-2782.
DO I NEED A GUARDIAN FOR MY FAMILY MEMBER WHO HAS DOWN SYNDROME?
One of the critical issues facing parents, siblings or other concerned family members of an adult who has Down syndrome is how to best assist and protect him or her when it comes to making legal, financial, and medical decisions. Just because an individual has Down syndrome does not mean that he or she lacks the mental capacity to make and communicate appropriate decisions.
There are several alternatives to guardianship which can be considered. The individual may have sufficient mental capacity to adequately make decisions and protect himself. If so, then he or she should consider signing Durable Powers of Attorney so someone can step in and assist if the mental capacity is ever lost. This is no different than for any other adult.
Not sure if guardianship is right for your family? National Council on Disability published a helpful report called Beyond Guardianship: Alternatives That Promote Greater Self-Determination for People with Disabilities. Read the report here.
However, if a person does not have sufficient mental capacity to be able to make and communicate appropriate decisions such that he or she may be taken advantage of or not be able to manage his or her affairs, then guardianship should be considered. This is a court proceeding where it must be proven that the person lacks sufficient mental capacity and needs the appointment of a guardian to make personal decisions (such as medical and housing) and a conservator if there are sufficient assets to manage.
Individuals with Down syndrome are now living well into their 50's and 60's. Their quality of life is enhanced due to strong loving families, community inclusion and acceptance as well as ongoing medical advancements. The resources on this page are designed to assist individuals with Down syndrome and their families to live to the fullest.
NDSS Aging and Down Syndrome Guidebook
NDSS Alzheimer’s and Down Syndrome Guidebook for Caregivers
Dementia and Intellectual Disabilities Caregivers Guide
Adults with Down syndrome are now reaching old age on a regular basis and are commonly living into their 50s, 60s and 70s. To enjoy all the wonderful aspects of a longer life, it is important to be proactive and learn about the issues that may lie ahead.
View helpful information regarding the specific issues regarding aging here.