Planning for Your Child’s Future (Guardianship, Special Needs Trust Fund):

No one knows your child like you do as their parent. You are and will be their best advocate to ensure they receive the best care at each stage of their life. To fulfill this, you need to know about the rights for your child as well as the best options for education and services available in your state.

As your child gets older, you need to prepare for their future.

1. Transition Planning:

   • When your child is 14 years old, they will have a “Transition Planning Form.”

   • When they are 18 years old, they will need to have a guardian to help them make decisions to continue to live their best life possible. This is a long procedure, so you will need to start 8 months before their birthday to plan:

     • The Clinical Team Report (CTR), which should be completed by a Neuropsychologist, physician, and social worker.

     • A petition (MPC 120) and Bond (Form 801) to be completed by the guardian after receiving the CTR.

     • These documents will be sent to the court for the Hearing.

   Guardianship Checklist for Clinical Team Report (CTR), Age 18+: Sample forms can be found at: Massachusetts Courts - Guardian IP Forms

2. Helpful Resources:

   • Understand your basic rights and transition planning: Federation for Children with Special Needs - They have a YouTube channel with Basic Rights, Transition Planning, and other useful information. The Transition Planning Form (TPF) should start at age 14 and will change each year depending on your child's skills.

   • Access to Special Education in your state:

     • Every Student Succeeds Act (ESSA): Purpose, Highlights, Standards (verywellhealth.com)

     • Education of Students with Disabilities: Federal and State Laws: 50 State Survey of Special Education Laws & Regulations (50 State Survey of Special Education Laws & Regulations)

   Additional State-Specific Information:

   • Florida: Children with disabilities who need specially designed instruction and related services are called exceptional students. The special help they receive at school is called Exceptional Student Education (ESE).

   • Massachusetts: Secondary Transition is a time that begins when students turn 14 (or earlier, if the IEP team agrees). From age 14 until they graduate or turn 22, students on IEPs receive transition services from their public-school districts.

   • North Carolina: Exceptional Children | NC DPI

3. Other Resources:

   • SPaNMass - Special Needs Advocacy Network: Provides advocacy, education, and support to empower families, professionals, and others involved with students with disabilities.

   • Finding the Right School:

     • Florida: List of Approved Program and Course Providers (fldoe.org)

     • Massachusetts: MAAPS - Massachusetts Association of Approved Special Education Schools

     • North Carolina: Compare 2024 Schools with Special Education Programs in North Carolina - Niche

4. Other Benefits:

   • Government Benefits Programs Special Needs Alliance: Provides information on various government benefits available to individuals with special needs.

5. Special Needs Trust (SNT):

   • A special needs trust is an estate planning tool that enables a person with a disability or functional needs to receive financial support without affecting means-tested government benefits they’re receiving like Medicaid or Supplemental Security Income (SSI).

6. Support Groups:

   • Parent Groups: Down Syndrome Resource Foundation (dsrf.org)

   • Local Support Groups: Downs Syndrome Association (downs-syndrome.org.uk)

   • Local Support: National Down Syndrome Society (NDSS)