Autism Awareness and Beyond - Presented by Kelly Adams, Loretta Kaes and Carolann Garafola.
What Services Can I Obtain for My Child or Adult/Child with disabilities?
Scott Leshin, a Personal Healthcare Advocate and father of a child with developmental disabilities, presents a seminar on navigating the system of benefits and healthcare options.
The State New Jersey through the Department of Human Services Division and its Developmental Disabilities Division is a primary source of help that families can access. The first thing that families need to do is:
Register with your state's Developmental Disabilities Agency, read on-line and go to the office for a one-on-one meeting with a counselor; start with this website: http://www.state.nj.us/humanservices/
Conditions that might be considered a developmental disability include: intellectual disabilities, cerebral palsy, autism, epilepsy, spina bifida, traumatic brain injuries and certain neurological impairments.
In order to receive services funded by DDD, a family must apply and the process can be lengthy and time consuming in completing the paperwork and application. While your child is still in school, it is imperative that the parent(s) begin this process. Ask you school district's case manager to help you and keep a log on all phone calls, requests to DDD and send requests in writing.
Criteria for acceptance by DDD requires that your child has a severe, chronic physical and/or mental impairment that manifests itself in the developmental years and before age 22. There must be substantial limits in three of life's activities from such categories as in self-care; learning, mobility, communication, self-direction, self-sufficiency and the ability to live totally independently. Your child also must be a legal resident of the USA and a legal resident of New Jersey. Wherever you live in New Jersey, there are Community Services Offices that cover the 21 Counties in our State. You can locate your nearest office from the following website: http://www.state.nj.us/humanservices/ddd/staff/cso/index.html. What you need to find out is if a particular office covers the service you need. For Example, Somerset County Office covers Case Management ONLY at 275 Greenbrook Road, 2nd Floor, Green Brook, NJ 08812, Phone: (732) 424-3301 The various services include Case Management, Day Services, Residential Services and Family Support Services. They are described as:
Case management services help individuals learn about and gain access to any services that can help address their needs. These include, but are not limited to, Medicaid Waiver and Medicaid State Plan services as well as medical, social, educational, county and municipal services. and/or information and referral services to everyone who is eligible to receive the services it funds. DDD funds three types of services for people who reside in the community.
Day Services are available, depending on the slots that are open in various agencies and programs and depending on the appropriateness of those settings. A person with a disability may want to look at a setting with regular employment, a traditional day program that meets five days a week, a special needs day program, a self-directed day program, a combination of part-time employment and a traditional program, a combination of part-time employment and a self-directed day program, a combination of a traditional day program and self-directed activities. Unfortunately, the choices may be limited depending on where you live in New Jersey. Go to this website for further information: http://www.state.nj.us/humanservices/ddd/services/day/index.html. Mt. Bethel Village's Self-Directed Day Program has made application to DDD and it has come under review for approval once a CO has been obtained for the building, opening in late October, early November. Applications for the Day Program attendees are now under consideration for those adults with moderate to high functioning capabilities on the autism spectrum, with developmental disabilities or traumatic brain injury.
Residential Services include individual supports that assist an individual living at home or elsewhere in the community. Some residential options that may be offered and funded by DDD for an individual may include: Group homes – in which individuals share a home with no more than three other residents and receives services from staff that is on-site 24-hours a day. Community Care Home – in which an individual lives as part of the family of a caretaker and receives assistance from that person and/or from an agency on a routine basis. Supportive Housing – in which an individual leases his or her own apartment and receives services on an as-needed basis either in person or through phone contact up to a total of 24 hours a day, seven days a week. Supervised apartments – in which an individual lives alone or with a roommate in an apartment that is leased or owned by a provider agency, which also employs staff that is available to serve the individual 24-hours a day. Mt. Bethel Village will offer semi-independent apartment living for adults in a complex that is under construction in Warren Township with 24/7 supervision on site. However, Mt. Bethel Village is not a provider agency as this is a private living facility. Intakes are in process and residents have been accepted into Mt. Bethel Village. There are 8,000 persons with developmental disabilities in New Jersey awaiting residential placement, thus those who are on the waiting list may wait years for placement.
Family Support Services are generally offered in all regions of the state such as respite, camp, Assistive Technology Devices; and home and vehicle modifications. If you do want to modify your home, you should check with your municipality to see if they have passed an ordinance to allow you to apply for permits WITHOUT paying for construction fees. The State of New Jersey passed a law about 10 years ago to allow each town to pass such an ordinance waiving construction permit fees for residential homes that needed to be retrofitted for a special needs child or adult. For further information check out: http://www.state.nj.us/humanservices/ddd/services/fss/index.html
Estate Planning for Your Child With Special Needs in New Jersey-It is Never too Soon
Carolann Garafola, Executive Director, Mt. Bethel Village
Estate planning has long been the topic that many run from, ignore or feel that they do not have the big assets that put them in the category of the wealthy. However, when a child with special, whether it be Autism, Developmental Disabilities or Traumatic Brain Injury, comes into the family, parents must face the reality that whether this child is their first or their third, plans must be made in case both parents are not living to take care of this child. Some families may think, my money will go to all my children and they will work it out. In other cases, some families may think, my oldest child will take responsibility to manage the finances for my child with disabilities or a brother, sister or god-parent make sure that adult housing is provided. Parents need to be in control of what happens until the day they pass; and so they need to consider such planning while they are alive.
Parents need to consider a number of issues that include:
Will my child with special needs be emancipated or would guardianship be put in place and need to pass from the parent(s) to a sibling or other relative;
What are my child’s medical, daily and long-term needs, especially in terms of housing?
How can I safeguard any assets in the form of monetary gifts that come to my child so that my child’s government benefits will be secure?
If family members are giving monetary gifts, how can I hold that aside prior to setting up a Special Needs Trust?
How can I find an attorney who can set up the Special Needs Trust?
What are the kinds of questions I should be asking an attorney in setting up a special needs trust?
What are the different documents that I will need to prepare for setting up a Special Needs Trust?
What are the different kinds of trusts that can be set up?
Will we begin to fund that Special Needs Trust immediately or at the end of life?
A parent will need to look at entitlement government benefits and other benefits based on assets, thus working with an attorney and an accountant will provide you with the knowledge to best protect your child with special needs and to access what is available. For example, Social Security is NOT based on financial needs nor affected by unearned income. However, SSI, Supplemental Security Income eligibility IS based on income and assets and MUST be kept below $2,000 total. Therefore monetary gifts and inheritances given to your child with special needs can jeopardize eligibility for SSI.
Thus, consideration of what to do with your home, your insurance and any retirement benefits that come to you and could pass to your heirs, requires answering a lot of questions; gathering of documents; planning; and careful due diligence in finding an attorney that will work with you to plan for your child with special needs. Speak with other families, attend seminars that are often held for free to meet with financial planners and attorneys, and seek out someone who prepares Special Needs Trusts as a specialty as they will more than likely be up on the latest laws. Check out the Internet to learn about such planning, and read as much as you can. The point is do it now.
Adults With Autism, Developmental Disabilities or Traumatic Brain Injuries: What Guardianship Means to Your Family
Carolann Garafola, Executive Director of Mt. Bethel Village.
As your teenager approaches 18 years of age, parents and guardians need to start thinking about the answers to these questions, and do so a couple years before his/her 18th birthday:
Is it important that my son or daughter is under my guardianship as a parent?
Does my child have the capability of making decisions about where he/she will live?
How will this 18 year old spend and manage money?
Who will make decisions about medications, health and/or treatment of illnesses or decide where to continue school and for how long?
Once the adult/child graduates from the school district, what is planned for the post secondary world of work?
Every parent wants to enhance their adult/child’s life and protect them through the learned skills of self-advocacy, and have their adult/child continue to learn functional skills in the least restrictive environment. There are a number of steps to take that should be a team effort between parent and upcoming adult/child. Parents need to begin the discussion of emancipation versus guardianship with their teenager at least by 16 years of age as your child needs to be part of this process. This is probably something that should be discussed whether your child has special needs or not. This discussion should be conducted with your child’s educators, and with support personnel who are part of his/her life.
Parents need to be realistically concerned about the cognitive capabilities of their child, the maturity level and any other needs that he or she has. Once again, seeking assistance from those who educate and support your child at school, in the community and within the family is critically important in this decision-making effort.
If you are going to file for guardianship, it will take specific documentation to justify to the courts why this is necessary and the process can be very long and costly. There are attorneys and organizations that can help in this effort to obtain guardianship and speaking with other parents can be very helpful in taking that road as it is not an easy one.
Therefore, speaking with others who have been through this process and asking them where they obtained help can ease the trip on the road to adulthood and guardianship for you for your adult/child or not.