Step Four: Planning ahead and additional services
There are numerous agencies and individuals in NYC who are able to provide advocacy for your child in many areas. Advocacy agencies often help negotiate disagreements with services or educational placement, can assist with immigration and citizenship education, can help obtain financial assistance, housing, medical services, legal counsel, home modifications, etc. To obtain a list of Advocacy agencies in your borough, call OPWDD at 212-229-3231 or Resources for Children with Special Needs at 212-677-4650 for your borough’s most recent Family Support Services Guide. Another wonderful source is www.fegs.org.
Advocacy for Children puts out a Guide to Autism Spectrum Disorders and Education. The pdf can be downloaded at: http://www.advocatesforchildren.org/Sp%20Ed%20Autism%20Guide%2010.2011.pdf
Your child may be eligible for an afterschool or weekend program and transportation. These programs can assist with homework, provide music therapy, offer recreational and socialization activities, take children on trips, provide arts and crafts, etc.
You may also be able to receive reimbursement for private, therapeutic afterschool programs such as music therapy, dance therapy, hippotherapy (horseback riding), swimming classes, etc if you can prove these are therapeutic services not provided in school that benefit your child.
To get a list of afterschool programs, call OPWDD at 212-229-3231 or Resources for Children with Special Needs at 212-677-4650 for your borough’s most recent Family Support Services Guide.
Resources for Children with Special Needs, www.resourcesnyc.org, publishes a list of afterschool programs entitled “After School and More”.
The Brooklyn Public Library offers afterschool readings and many more activities for children from birth – 12 years of age.
Your child has to be evaluated by a specialized team to determine his eligibility for assistive technology, augmentative communication, computer access, or mobility devices. Your child’s school can set up the evaluation or you can use an agency that specializes in this service. Call OPWDD at 212-229-3231 or Resources for Children with Special Needs at 212-677-4650 for your borough’s most recent Family Support Services Guide.
A useful resource is:
The Dept of Education has an Assistive Technology Guidebook: http://schools.nyc.gov/NR/rdonlyres/C275A4F4-A341-4638-A6D0-81FEE99A2401/0/ATGuidebook0809Finalcopy.pdf
For the DOE’s list of AT Resources: http://schools.nyc.gov/Offices/District75/Departments/Technology/AssistiveAdaptive/at_resources
This device can be secured in three ways: first by purchasing it yourself and submitting the receipt for reimbursement (you may only receive partial reimbursement based on reimbursement limits), through the Medicaid Waiver, or through the Department of Education. If Medicaid pays for the device, the DOE has a 5-year equipment rule that says once Medicaid has paid, your child cannot receive another device for 5 years even if he outgrows the one he has. Also, if your child’s IEP does not include additional therapy to learn how to use the device, your child will not be given this necessary instruction.
By securing the device through the DOE, your child starts with a device at his current level and graduates to more sophisticated equipment as needed. Also, the IEP changes to include a new related service called Assistive Technology Speech which trains him how to use the device. This is completely separate from his regular speech therapy. The down side of getting the technology through the DOE, however, is the long wait before your child actually gets the device.
Children with disabilities often have accompanying behavioral issues which can affect his quality of life and that of his family. Your Waiver agency has a Community Habilitation program or can find you one that can be used to work on behavioral issues (or any other skills your child may need) in your home. There is no fee for this service.
A new waiver program called Intensive Behavioral Services lasts for 6 months and addresses behavioral issues and designs a long-term plan for your child. The IBS is for individuals with substantial challenging behaviors that put them at immediate risk of placement in a more restrictive living environment.
The OPWDD provides a Family Support Services Guide that lists Behavior Management and Counseling Agencies that can offer help. Call them at 212-229-3231 or Resources for Children with Special Needs at 212-677-4650 for the guide for your borough. Another good resource is www.fegs.org.
www.INCLUDEnyc.org, AHRC (www.ahrcnyc.org), Heartshare (www.heartshare.org), and YAI (www.yai.org) offer free, on-going lectures on behavioral issues all over the city. Check each agency for a listing of their lectures in your area.
Check the events link on this site for lectures and support groups.
In home crisis intervention and crisis respite are available for emergency situations. This respite gives family members a needed break from working with their disabled child. The listing of agencies that offer this support can be found in the most current Family Support Services Guide from OPWDD (212-229-3231) or Resources for Children with Special Needs (212-677-4650).
At the beginning of every year, INCLUDEnyc hosts a camp fair for parents of special needs children. (www.INCLUDEnyc.org). You can meet with representatives from day camps and sleep away camps that offer services and activities for children with emotional issues, physical disabilities, and for those with intellectual challenges or who are on the autistic spectrum.
At this fair, Camp directories are provided for free. The OPWDD also provides a list of day camps and summer camps. (212-229-3231).
These are a few handy tips to save money on summer camps:
1. Start looking early. Some camps offer ‘early bird specials’. Searching early helps you budget and save for summer activities. To check the schedule for American Camp Association, NY and NJ fall fairs, go to www.aca-nynj.org/events. Or call 212-391-5208.
2. Child and Dependent Care Tax Credit – The IRS allows an income tax credit of up to $6000 of dependent care expenses if you have 2 or more dependents (up to $3000 for one dependent). The amount of the credit is based on your adjusted gross income and applies only to your federal taxes. This applies to qualifying day camps as well. Go to www.irs.gov for more info about the Child and Dependent Care Tax Credit.
3. A Dependent Care Flexible Spending Account allows parents to be reimbursed on a pre-tax basis for child care or adult dependent care expenses that are necessary to allow the parent to work, look for work, or attend school full time. See the FSA Feds website for more info at: www.fsafeds.com.
4. Contact the camp director and see what possible arrangements can be made. Some camps offer sibling discounts, early bird registration discounts, or payment plans.
Each year, the Staten Island JCC runs a summer camp program for children with special needs. The program offers door-to-door bus service for Brooklyn residents to the Henry Kaufman Campgrounds on Staten Island. Costs are covered by the HCBS Medicaid Waiver program. This program supports children 5-21 with a full 7 hour day of social and recreational activities. For more information, contact Brian Faughnan at bfaughnan@SIJCC.com, 718-475-5200 ext 1186.
You can get the cost of the camp reimbursde if your child qualifies. Call your Developmental Service Office and speak with Family Support:
Bronx: 718-430-0752; Brooklyn: 718-642-6520, 8680, 8629; Manhattan: 212-229-3122, 3112; Queens: 718-217-5722,6485; Staten Island: 718-982-1904.
Other sources include (but are not limited to): American Camping Association for those attending an ACA accredited camp: 212-391-5208 pr 1-800-777-2267 and inquire about the SCOPE Program.
NY Institute on Disability: 718-494-6457
FACES (Seizure disorders): 212-871-0245 ext 113
Autism Speaks (ASD): 212-252-8584
Camp Brooklyn (Brooklyn residents only): 718-802-CAMP
CHADD: 212-721-0007 (ADD and ADHD)
INCLUDEnyc offers an extensive list of Family Reimbursement Programs.212-677-4650.
Environmental modifications provide specific changes, or modifications, in a recipient’s home to help the individual function as independently as possible. These modifications may include (but not limited to) the labor and materials to widen doorways for wheelchair access, install a wheelchair ramp, relocate plumbing and/or electrical systems to accommodate specialized equipment, bathroom modifications, and kitchen accessibility for independent meal preparation.
All and any modifications to the home require prior approval from HCBS to determine eligibility before any changes can be made. The individual must apply for this service to his HCBS case management agency in their county using “Application for Services” (SFN 1047).
It’s hard to think of the future when you are involved with daily struggles, but the sooner you and your family make appropriate plans for your child’s future – and any unforeseeable situation – the more peace you will find and the more time you will have to dedicate to your child’s daily needs with the comfort that everything is in order for his future.
The NYS Developmental Disabilities Planning Council publishes a very helpful guide called “Planning for the Future”. You can download it at:
The Planning Guide takes you through the process of planning and executing essential decisions that will benefit your child in the future. It also gives you the control and decision making powers for his future. Without this planning, you can never know who will be making decisions for your child and who will be out of the loop.
As your child gets older and his needs change, you may decide to amend some of these decisions, so future planning is an on-going process based upon your child’s changing needs and abilities.
Your planning may include decisions on future education, housing, healthcare, employment, disability payments, burial planning, financial planning, and guardianship for your disabled child.
Your family may also have other needs that can be addressed by an attorney.
Since your child will lose his government benefits if he has more than $2000 to his name, the best way to leave assets to your child and protect his benefits is by establishing a Special Needs Trust (SNT). This Trust can be funded during your lifetime (Inter Vivo or Living Trust) or monies can be deposited into the fund upon your death (Testamentary Trust).
There are three types of SNT you will want to discuss with your financial planner or attorney: A “Third Party” SNT (Escher) or a “First Party” SNT (also called an OBRA-93 Payback or self-settled Trust). In a Third Party Supplemental (Special) Needs Trust, the third party refers to the individual whose assets are being used to fund the trust. In other words, the money comes from someone other than the disabled person, such as you, the parent.
You can leave any amount of money in this SNT and your disabled child becomes the beneficiary. You chose a Trustee who uses the money in this fund only for the benefit of your disabled child until the fund runs out or until the beneficiary dies. If there are any funds left after the beneficiary dies, those funds will be distributed to those people selected by you in your Will. The Trustee may use the funds to pay the beneficiary’s bills for goods and services, including luxuries. However, money cannot be paid directly to the beneficiary.
In the second type of SNT, the First Party SNT, the first party would be the person whose assets are being used to fund the trust, in this case, the disabled person. These assets may have come from a lawsuit, a direct inheritance, employment income, or other sources of income. It is administered the same way a Third Party SNT is during the life of the beneficiary by choosing a Trustee to oversee spending on your child’s behalf. However, upon the beneficiary’s death, the State has the priority right to be reimbursed for Medicaid benefits paid on your child’s behalf during his lifetime.
Only after the State has recouped its money will any remaining funds be available for distribution according to your Will.
“Pooled Trusts”, the third type of Trust, can also be established by a not-for-profit (NFP) organization. In a pooled arrangement, an individual contributes funds to an account managed by a NFP and the funds are combined and invested together with other contributors, although each contribution is recorded in a separate account from which distributions to the beneficiary are made. These pooled funds can also be Third or First Party Pooled SNT.
All SNTs need to be protected and the laws are always changing, so you should work with an attorney who knows the current laws. The OPWDD has a list of attorneys who specialize in SNTs.
Group homes are small, residential facilities, often a private home, within a community designed to serve children and adults with long-term or chronic disabilities. The population in these homes are usually small (6-10 residents) with full-time, 24 hour trained staff. Individuals with less intensive needs may be eligible for supportive apartments, which provides housing and staffing part-time to help with budgeting, shopping, and meal preparation, leisure planning, and medication administration. Residents are taught skills to become more self-sufficient. There are numerous agencies that have group homes, but the waiting list is often extremely long. There are more homes available for adults than there are for children.
There are supervised group homes for aging individuals that are either Individualized Residential Alternatives (IRAs) or Intermediate Care Facilities for people with developmental disabilities (ICF/DD). The support staff may have some training in certain medical procedures, but nursing is generally not available on a 24-hour basis.
For the medically frail, there are 24-hour Nursing Residences that can be either ICFs/DD or IRAs. These group homes have enriched direct support staffing and include either a Registered Nurse or a Licensed Practical Nurse and 24-hour-on-call RN support. These homes are modified to be fully accessible, and except for ventilator care, can provide for most types of chronic nursing needs. The care received in these facilities is generally more individualized to a nursing home.
Integrated Group Homes are certified IRAs and ICFs that house both aging and younger populations in an integrated setting.
All residents who lived in an OPWDD certified group home and have an income source (SSI, Social Security, or other income) are entitled to a monthly personal allowance. This right is specified in law. The amount of money received is individual, but the amount varies depending on the type of residential program. For instance, individuals who live in Family Care homes can receive $102 each month, while those who live in IRAs or community residences can receive $112 each month. A person receiving both SSI and Social Security are entitled to an additional $20 each month. If a person holds a job, the first $65 of the gross wages plus half of the remaining wages are added to the basic personal allowance amount.
Since it is often the residential provider rather than the individual who receives the monthly SSI or Social Security check on behalf of the resident, (the Executive Director of the facility is usually designated by the Social Security Administration as the individual’s Representative Payee), the Representative Payee is mandated by law to properly manage the resident’s personal allowance. These regulations stipulate that the personal allowance is to be used exclusively for the individual’s benefit with the individual making choices about spending this money to the best of their abilities.
Another form of independent living is the Point (Pursuing Our Independence Together) Program where high functioning individuals live in their own apartments, often with roommates. An agency supervises their jobs, day programs, or schooling and makes on site visits each week. These apartments are often clustered within a community.
Family Care provides community-based residential housing in certified private homes for individuals with development disabilities. www.opwdd.ny.gov, 518-473-5436.
Guardianship is another important step to take on behalf of your child. As long as your child is a minor, you are the responsible party making decisions for your child. But once he turns 18, a guardian needs to be appointed to make decisions for your child or else the State will. You should start this process about 2 months before your child’s 18th birthday.
You can save yourself a lot of money by filling out the forms yourself. Download the Guardianship 17A Petition and follow the instructions.
The OPWDD has a Family Support Services Guide that lists agencies that can help you with financial planning and guardianship. Call them at 212-229-3231 or Resources for Children with Special Needs at 212-677-4650 to get a copy for your borough.
The Medicaid Waiver offers health care for your disabled child and there are 2 other federal programs that provide health insurance coverage to low income, uninsured children, families, and single individuals.
Family income is a determining factor with Child Health Plus A or Child Health Plus B. These plans are available through dozens of managed care providers throughout New York State. To qualify, a child must be younger than 19, be a NYS resident, not eligible for Medicaid, and not have any other health insurance. This policy is available to all children regardless of citizenship or immigration status.
For more information:
Family Health Plus (FHP) provides health insurance to low income adults between the ages of 19-64 who have income that disqualifies them for Medicaid. This also is available through managed care providers and includes primary and preventive care, medicines, family planning, and inpatient and specialty hospital care. It does not cover non-emergency transportation or long term care for the chronically ill. To qualify, a person must be between 19-64 years of age, be a NYS resident, meet citizenship/alien requirements, not be eligible for Medicaid due to income, not have any other health insurance, and have a family income that falls below the maximum for the size of the family.
For more information:
Long-term health care is also available for qualified applicants. The Long-Term Home Health Care Program (LTHHCP) provides treatment at home that are similar to those received in a nursing home. It offers a coordinated plan of medical, rehabilitative, and personal care. A licensed LTHHCP provider agency evaluates the individual to determine if he would benefit from coordinated medical and personal care. Eligible applicants are referred to the Home Care Services Program (HCSP) which makes the final decision.
Waiver services describe non-medical home and community-based services that are approved to keep the patient at home. These services include home care, housing improvement, social transportation, respite care, social day care, personal emergency response system services, moving assistance, medical social services, respiratory therapy, nutritional counseling, and case management.
To get a list of LTHHCP agencies in your area, call 212-835-7731 or:
The Assisted Living Program (ALP) was designed to help those individuals who are medically eligible for nursing home placement, but who don’t need the highly structured medical environment of a nursing facility. The ALP meets these individuals’ needs in a less restrictive, lower cost residential setting in a licensed facility. It provides housing, meals, and services – personal care, room, board, housekeeping, supervision, home health aides, personal emergency response services, nursing services, therapy, medical supplies and equipment, adult day health care, other health services, and case management.
To qualify for ALP, an individual must be 55 years or older, in need of a place to live where extra help is available but no enough to need nursing, have a stable medical condition, are able (with some help) to take sufficient action to assure their own safety in an emergency, and are Medicaid eligible.
For more information, call 212-690-9314, or:
The Personal Care Services Program (PCSP) provides assistance with Activities of Daily Living (ADLs). Your child must be Medicaid eligible to receive these personal care services. Your child’s doctor must complete the Physician’s Request form (M-11Q) and specify the need for PCSP. A nurse will make a home visit to determine if the applicant is eligible and recommends a plan of care. A Community Alternative Systems Agency (CASA) will provide a home attendant that can provide Medicaid funded personal care services.
For more information:
The Consumer Directed Personal Assistance Program (CDPSP) allows for greater flexibility in choosing home caregivers. This program helps chronically ill or physically disabled individuals with ADLs and/or skilled nursing services. The participant has to be able to make informed choices about their care or have a legal guardian make these decisions. The participant assumes full responsibility for hiring, training, coordinating other services, maintaining payroll records, and even terminating the employment of the hiree. To qualify for CDPAP, the physician must fill out the M-11Q for services.
For more info:
Managed Long-Term Care (MLTC) provides long term health care for those individuals medically eligible for nursing home level of care but who can remain at home with a safe service plan. Some services under this program require prior authorization and care is provided by a Registered Nurse.
To qualify, the individual must meet the age requirement of a particular plan but be at least 18 years of age, have a chronic illness of disability that makes him eligible for services usually provided in a nursing home, can stay at home safely, are expected to need long-term care for at least 120 days from the date of enrollment, live in an area served by the plan, have or are willing to change to a doctor who works with the plan, and have a way of paying for the plan, such as Medicaid.
For more information:
Private insurance for your child is 100% reimbursed by Medicaid. Contact HRA’s info line at: 1-877-472-8411 and ask about the Medical Assistance Program.
The Brooklyn Public Library has a listing of organizations where individuals with special needs can get job placement and training.
The OPWDD Family Support Service Guide lists agencies throughout the 5 boroughs that provide parent training, lectures, support groups, and recreational activities for family members. Call them at 212-229-3231 or Resources for Children with Special Needs at 212-677-4650 for a copy for your borough.
The OPWDD Family Support Service Guide lists agencies throughout the 5 boroughs that offer afterschool, evening, and weekend programs for special needs children.
Call them at 212-229-3231 or call Resources for Children with Special Needs at 212-677-4650 for a copy of your borough’s Guide.
More and more play and recreational places are opening up for special needs children:
Extreme Kids and Crew – 40 Brevoort Place, Ft. Greene, Sensory gym, 347-528-4262, firstname.lastname@example.org,
King’s Bay Youth Organization – 2670 Coyle St, Sheepshead Bay, sports, 917-623-6225, www.kbyosports.com
PowerPlay – 432 3rd Ave, Park Slope, gymnastics and movement, 718-369-9880, www.powerplaykids.com
Seaside Therapeutic Horseback Riding, 3903 Nostrand Ave, Jamaica Bay, indoor and outdoor riding, 718-812-8466, www.SeasideRiding.org
Basketball City – Pier 36, South St. Seaport, 212-233-5050, www.basketballcity.com
Building Blocks – Field House, Chelsea Piers, Toddlers and preschool language and motor development, 212-336-6500 ext 6573, www.chelseapiers.com/fh/building-blocks.cfm
Kulam – JCC, 334 Amsterdam Ave, UWS, Sunday programs, 646-505-5729, www.jccmanhattan.org
Mighty Milers – NY Road Runners, Midtown East, 212-423-2227, www.mightymilers.org
Super Soccer Stars – 606 Columbus Ave, UWS, 212-877-7171 ext 29, www.supersoccerstars.com
Swim Works – 109 E 50th St, Midtown East, 212-378-0219, www.swimworksnyc.com
ANIBIC (Brain injuries) – 61-35 220th St, Oakland Gardens, Saturday activities, 718-423-9550, www.anibic.org
Dancing Dreams- Bayside, 718-428-2600, www.dancingdreams.org
MKD Karate, Kickboxing, and Self-defense – 72-26 Roosevelt Ave, Jackson Heights, 347-560-0653, www.mkdkarate.com
Soccer Rockets – 75-34 Bell Blvd. Bayside, 347-693-8997, www.SoccerRockets.com
The Medicaid Waiver provides for reimbursement of numerous items and activities. To get the list of agencies that provides reimbursement. Call OPWDD at 212-229-3231 or Resources for Children with Special Needs at 212-677-4650 and request their most current Family Support Service Guide for your borough.
Respite care supports families and other care givers by providing intermittent care for your disabled child. It serves birth parents, adoptive parents, and foster parents of special needs children alike.
An evaluation of the child is done by the agency and a determined number of hours of respite care are awarded for the year. The respite can be in the home, out of the home, overnight, weekends, emergency, or school holidays.
The respite worker is paid by the agency where he/she is registered. Respite workers cannot be present if another home attendant or care giver is present.
Community Habilitation (formerly called ResHab) is a service paid for by Medicaid. After a nurse or program professional has evaluated your child for this service, a determined number of hours per year are awarded. The Community Hab worker comes to your home to work on a specific set of skills or issues, such as toileting, ADLs, behavioral problems, socialization, etc. The home attendant or nursing service can be present while the Community Hab worker is in your home provided the CH plan describes services and supports that are different than those being offered by the home health aide or nurse. There can’t be overlapping of services.
The Community Hab worker is paid by the agency where he/she is registered.
The OPWDD Family Support Service Guide lists agencies that provide Respite Care and Community Hab. Call them at 212-229-3231 or call Resources for Children with Special Needs at 212-677-4650.
DayHab programs focus on skills development that increase a person’s self-sufficiency.
The day program might work on transportation skills, socialization, shopping, and vocational skills.
BCS Bright Lights Program, 285 Schermerhorn St., Brooklyn 718-310-5792 M-F 8:30am – 3:00pm
The classification your child receives is one of 13 as defined by NYS law to determine his eligibility for special education services.
This link defines all the terms used in the Special Education Law.Here is a list of resources for each of these classifications:
www.fraxa.org (Fragile X)
www.nfxf.org (Fragile X)
http://www.ahany.org/ (Asperger’s Syndrome)
www.rhettsyndrome.org (Rhett’s Syndrome)
Deaf-Blindness, Deafness, Hearing Impairment, Visual Impairment
Orthopedic Impairment (Bones Diseases, Cerebral Palsy, Multiple Dystrophy, Polio, Scoliosis, Spina Bifida, Spinal Muscular Atrophies, etc.)
http://www.napcse.org/exceptionalchildren/orthopedicimpairments.php http://www.rarebonedisease.org/ http://www.cerebralpalsy.org/ www.mdausa.org www.mda.org http://www.polioeradication.org/disease.asp http://www.scoliosisassociates.com/ www.srs.org (Scoliosis Research)
www.sbaa.org (Spina Bifida)
www.smafoundation.org (Spinal Muscular Atrophy)
Other Health Impairment
Speech or Language Impairment
Traumatic Brain Injury
The Social Security Administration (SSA) provides benefits to those individuals who have disabilities that create barriers to getting a job. SSI and SSDI are 2 of those programs.
SSI is needs-based and may be available to individuals with little income and few resources. The 2011 resource limit is $2000. The funds supplement the incomes of the elderly, blind, or disabled who can’t provide for themselves. The amount of monthly benefits a person receives from SSI depends upon his income and living situation.
If a person lives on his own, the benefits are different than if he is being supported by someone else. Food stamps and government rent subsidies do not affect benefits.
Disability benefits continue until age 65, although there are periodic submissions of medical evidence of need.
SSDI provides benefits to disabled or blind individuals who have paid into the social security program or to individuals who have been dependent on another person who has paid into the social security program. Usually a disabled child under the age of 22 can collect social security benefits on a parent’s work record when the part retires, becomes disabled, or dies. The definition of a disabled child is quite strict: the child must have a physical or mental condition(s) that very seriously limits his abilities and activities. The condition must have lasted, or are expected to last, at least one year.
A state agency will make the final determination about the child’s disability. For more information, call 1-800-772-1213 or TTY 1-800-325-0778.
If your child is going to take a (school) bus to school, it has to be written on his IEP. In addition, if he requires an air-conditioned bus, a mini bus, a specially modified bus (wheelchair ramp, special seat belts, etc) or van, or requires the supervision of a transportation para, this must all be on his IEP.
The Office of Pupil Transportation (OPT) is the city agency that will take your child to school and home again. http://schools.nyc.gov/Offices/Transportation/default.htm OPT will send you a letter days before school starts that explains his route and when he can be expected to be picked up at home. This schedule generally takes a few days before times become reasonably more accurate. And the addition or subtraction of a student will also change pick up and drop off times.
Many afterschool programs provide free yellow bus or van transportation from school to activity and home. It is a good idea to make sure your child will be bussed back home again.
Medicaid Waiver extends to Access-A-Ride.
The application is available on-line:
This service is available 24 hours a day, 7 days a week, including holidays. Fare is the same as mass transit. These vehicles are adapted for wheelchairs.
Medicaid Waiver pays for necessary modifications to your car and van to help transport your special needs child. In addition, there is a $1200 reimbursement for taking your child to and from appointments or for any trips you make in your vehicle on his behalf.