1) I’ve been hearing a lot of acronyms – what do they all mean?

First if you hear “BCL FSC” – this means us!

Better Community Living Family Support Center.

Other Acronyms:

• ABA – Applied Behavior Analysis
• ADOS – Autism Diagnostic Observation schedule
• ADA – Americans with Disabilities Act
• ADHD – Attention Deficit Hyperactivity Disorder
• ASD – Autism Spectrum Disorder
• AT – Assistive Technology
• AWC – Agency with Choice
• BIP – Behavior Intervention Plan
• CBDS – Community Based Day Supports
• DDS – Department of Developmental Services
• DESE – Department of Elementary and Secondary Education
• DOE – Department of Education
• DSP – Direct Support Professional
• EOHHS – Executive Office of Health and Human Services
• ESY- Extended School Year
• FAPE – Free Appropriate Public Education
• FBA – Functional Behavior Assessment
• FERPA – Family Educational Rights and Privacy Act
• IDEA – Individuals with Disabilities Act
• IEP – Individualized Education Program
• IFFS – Intensive Flex Funding Supports
• IHS – Individual In-Home Supports
• ISP – Individualized Service Plan
• LRE – Least Restrictive Environment
• MRC – MA Rehabilitation Commission
• NAMI – National Alliance on Mental Illness
• NCLB – No Child Left Behind
• NLD – Nonverbal Learning Disability
• PACER – Parent Advocacy Coalition for Educational Rights
• PCA – Personal Care Attendant
• PTI – Parent Training and Information Centers
• SSI/SSDI – Supplemental Security Income/Social Security Disability Income
• TBI – Traumatic Brain Injury

 

2) I need help getting support for my child with a disability. Who can help?

The Department of Developmental Disabilities is a program funded by the state of Massachusetts to assist families in getting support for children/adults with intellectual or developmental disabilities.

The application process begins with a form you can find on the Mass.gov website. You will need a copy of your child’s birth certificate, social security card, Proof of address, documents or evaluations pertaining to your child’s diagnosis, and if applicable a copy of your child’s IEP, reports from EI, neuropsychological exams, or genetic test results.

Once approved, you will be paired with a DDS Service Coordinator from your area. You may also be paired with a Family Support Coordinator. They assist families with finding community resources, medical/educational referrals, recreation, support groups, and more!

There are also some great community organizations that provide resources and additional activities for individuals on the spectrum, such as Community Autism Resources (www.community-autism-resources.com) and Asperger/Autism Network (www.aane.org)

 

3. My child was just diagnosed but is too young for school, what are our next steps?

If your child is between the age of Birth – 3, their doctor can refer you to Early Intervention services through Family Ties. Here is a link to their page for this region

https://www.massfamilyties.org/region/southeast-region/

Early Intervention services will pair up your child with a specialist who will come to your home and work with your child one on one. At 3, your child will graduate from EI services and they will help decide if your child needs continued services such as Head Start or Preschool.

 

4.) What is a Family Support Center and how can I get connected?

A Family Support Center provides families with a range of services and supports that include: information and referral, navigating state and local services, support groups, trainings, networking, mentoring, and social/recreational opportunities. Family support services are designed to provide information, assistance, and a wide range of supportive services to families with children and adults with disabilities living at home. These services should be flexible and respectful of cultural, social, financial, and spiritual differences.

Families can access information and referral from Family and Autism Support Centers even if they are not yet eligible for services from DDS. They are available to assist with the DDS eligibility application process.

The DDS Family Support Directory is available online at https://www.mass.gov/lists/dds-family-support-services-information. This includes information about local Family Support Centers across the state, the Centers focusing on specific culturally and linguistically diverse populations, and regional Autism Support Centers.

When found eligible for DDS services, families should receive a one page welcome flier from DDS that describes the services available at these Centers with contact information for their local Family Support and Autism Support Center. Families are encouraged to contact their local Center to obtain additional information and to get on their mailing list.

 

5.) What supports are available for families with intensive needs?

DDS offers several specialized and comprehensive family support programs including the Medically Complex Program for children living at home with significant cognitive, physical and health care needs, and the Intensive Flexible Family Support Program (IFFS) for families facing increased stress and challenges caring for their child at home. These programs have specific eligibility criteria and referrals need to be made by the local DDS Service Coordinator. DDS also administers the Department of Elementary and Secondary Education/DDS (DESE/DDS) Program, and the Children’s Autism Waiver Program. These two programs have specific eligibility requirements and application processes. Your DDS Area Office Service Coordinator can provide you with more information about these service options.

 

6) My child’s teacher thinks they need to be evaluated for an IEP/504 Plan. What is the difference between a 504 Plan and an IEP?

First, you will receive a form to give your child’s school granting permission to evaluate your child. They will give you a copy of your Parent’s Notice of Procedural Safeguards. This pamphlet is very helpful.   https://www.doe.mass.edu/sped/prb/

They will set up an evaluation with the appropriate members of staff and collect data on your child over a small period. The first step at your IEP Meeting will be to determine if your child is eligible with the information that was collected. They will follow the special education Eligibility/Initial and Reevaluation Determination form.

Step 1 (Box A) – 1. Does the child have a disability? The list includes autism, developmental delay, Intellectual, Hearing, Vision, Deaf or blind, Neurological, emotional, communication, physical, specific learning, or health-related disability.  If the child is found not to have a disability using the data collected, the meeting ends.

If the child is found to have a disability, the next step (2a) is that the team determines if the disability causes the child to not make effective progress. This is measured by looking through the child’s classwork and other evaluations. If the child makes effective progress or the lack of progress is not related to the child’s disability (2b) or the child doesn’t require specialized instruction, then the child is not eligible for an IEP but could be eligible for accommodations under a 504 Plan. If the team answers yes to 2b and 2c, the team will transition to writing the child’s IEP.

A 504 Plan is different from an IEP in that it is a set of accommodations meant to help a child manage their disability within the class and access learning. A 504 plan provides accommodations for health care needs such as help with medications, modified or removed gym requirements, and assistance with any physical needs the child might need.

The process to draft an IEP is a team effort and very much a draft process. The Team creates goals for the child using the information they collected during their assessments and input from the team. This includes the section of service delivery – which is the type of services they will provide the child, how often, and how long.

A copy of what an IEP looks like can be found here. https://www.doe.mass.edu/sped/iep/forms/english/iep1-8.pdf

IEP’s are reviewed yearly, with a progress report as often as every report card period. IEP’s are reevaluated every 3 years. At the triennial review, the student will go through another set of assessments like the initial determination and the same flow chart will be used to determine if the student still needs an IEP

 

7) What happens after my child turns 18 and they are on an IEP? What about after they graduate from High School?

In MA, transition services start as early as 14 and end at the child’s 22nd birthday. At 14 years old, a child can be a part of their IEP process and help shape what path they want to take. This could include self-care skills, employment skills, and any other set of skills to help the student work towards future goals. Your team should look yearly at the goals and reflect back to say “what skills does the child have this year that they did not have last year” These goals should help work towards you or your child’s vision of what after high school looks like (ex. college, employment or independent living).

Here is a brochure regarding transition goals for a child with an IEP. https://fcsn.org/wp-content/uploads/sites/2/2021/06/DESE-Brochure-1_web-sm.pdf

At Age 22, an individual is eligible for transition services which includes creating a plan/vision for the next steps of that person’s life. This includes things like daily routines, information about employment goals, living arrangements, day programs, and end-of-life care.

If your child needs these services, their school should make a Chapter 688 referral. Eligibility for these services requires the individual to be receiving special education services, be unable to work independently without support for more than 20 hours a week and need continuing services after turning 22. This needs to be done 2 years before turning 22.

 

8) My child is almost 18 – should I apply for guardianship? How do I do this?

In MA, the age of majority is 18. At 18, your child can do all the same things you can: vote, open a bank account, make their own medical decisions, etc. If you feel your child can not make decisions for themselves, you can file for guardianship. This process is best started before they turn 18.

You will need to fill out the forms listed here https://www.mass.gov/how-to/file-for-guardianship-of-an-incapacitated-person to start the process. This includes a form signed by a medical professional that has assessed your child within the last 30 days. You will need to go before a judge once the process gets started.

If you feel your child can make decisions but might require some support, the other option is supported decision-making. This is set up by writing out a legal agreement with the people providing their support. This support can be changed by the child at any time

 

9) What is SSDI/SSI?

SSI is supplemental security income and SSDI is social security disability income. SSI helps low-income families with supplemental funds. This can be applied to at any age if your child is eligible. To be eligible, your child must have a disability that limits their activity and lasts more than a year.  SSDI is for disabled parents who have worked in the past before they became disabled. The parent’s child is eligible for benefits until they turn 18.  Both programs are run by the social security administration.

The first step when applying is to fill out a form called the Child Disability Report. You will get a call within a few days to review the information and start the application process. After the application is submitted, a decision is mailed in 3 to 5 months.

For your interview, they will ask you for your important paperwork such as your paystubs, a copy of your child’s IEP, a copy of your child’s birth certificate, a list of all teachers, schools, doctors, and therapists your child had seen or attended in the last year, and copies of bank statements or any other financial paperwork.

The BCL Family Support Center is now an official partner of the SSI Office of New Bedford, with a personal liaison who works with our families to expedite the process. If you would like to apply for SSI or SSDI and need assistance, reach out to your Family Support Coordinator!

 

10) What is a special needs trust? How can I set one up?

A special needs trust is a trust to set up money for a family member with a disability. The funds in this trust do not count in a person’s limits for their eligibility in assistance programs like SSI, Medicaid, or Housing assistance. The trust fund should have someone to oversee the trust for the person whom the trust is for. PLAN (Planned Lifetime Assistance Network) can help for people in Massachusetts and Rhode Island. Visit www.planofma-ri.org or call 888-890-PLAN

 

11) What is Assistive Technology? How can it help?

Assistive Technology is anything that will help an individual with everyday life. This can range from highlighters and pencil grips that assist with focusing and writing, to electronic tablets with text to speech programming. Walkers and wheelchairs help people get around, as well as adding handrails and a wheelchair ramp to modify the home. Your Family Support Coordinator can assist with finding any assistive technology you or your child may need.

You may also be eligible to receive assistance with technology such as a computer or tablet through the Emergency Broadband Benefit. Visit www.fcc.gov/broadbandbenefit

 

12) What is Extended School Year? Is my child eligible for it?

Extended School Year is for when a child is at risk of or has shown signs of regression during the school year. Extended Year provides them with school during the summer to help the child not lose any of the progress they have worked on. While not every child qualifies for ESY, the law states that the state can’t choose who can get services based on the disability they have alone. They will assess the child to see if they qualify. It is helpful to test your child around school breaks to gauge whether the child is at risk of regression, and its especially important for the child to be tested at the beginning and end of the school year.