Our guest blogger this week is Denise Horsford, NYC Parent Coordinator and Special Needs Parent.

Have you ever thought that having a special needs child is difficult?    You know what, you are absolutely correct.  I have found a few things   that help me relax and it doesn’t cost very much.

There are small, inexpensive things that you can do to make your life a little easier, happier and healthier.

Start simple:

• Ask for help
• Be kind and patient with yourself
• Take a hour walk in the park
• Go to the beauty parlor
• A hot bubble  bath
• A  night out with the girls to the movies
• A date night with your significant other
• Manicure and a  pedicure
• Facial or Massage
• Parent support groups
• Yoga or exercise class at the local YWCA

You will be surprised how great you can feel with implementing a few “me moments” into your life.  You can swap turns in going out with family members.  Agree to do a service or task for them if they will watch your child for an hour or two.

You must remember first and foremost, that if you do not take care of yourself, it is nearly impossible for to take care of anyone else.  Your child needs a healthy and happy parent to help support them.  There are many organizations that offer services to help you find after school and recreational programs for your child.  The service is “Medicaid Service Coordination” and there is no charge to you for their services.  They are paid directly through Medicaid.  Take advantage of the help that is available to you, there is no need to do it all alone.  You can find a listing of Medicaid Services Coordination organizations on the NYS OPWDD website.

Don’t be afraid to let go, your child will just fine with someone other than you for few hours.

Listed below are definitions of the services that are offered through Medicaid Service Coordination:

• “Respite Services”

“Respite services provide temporary relief from the demands of care giving, which helps reduce overall family stress.  This often enables families to better meet the needs of their loved one with a developmental disability. Respite can be provided in the home or out of the home, during the day, evenings or overnight.  Respite is an “indirect” service that provides relief to individuals who are responsible for the primary care and support of an individual with a developmental disability. When a family member, Family Care provider, or live-in/house-parent staff person has to deal with such things as illness, emergency, and care giver or staff Vacation, respite services can ensure that the individual’s needs are met.”

Source:  NYS OPWDD

• Parents of children with developmental disabilities are eligible to receive Medicaid Service Coordination “(MSC”) and (“Respite”).

“Medicaid Service Coordination” assists persons with developmental disabilities and their families in gaining access to services and supports appropriate to their needs. OPWDD delivers almost all service coordination through its Medicaid Service Coordination program.  MSC is provided by qualified service coordinators and uses a person-centered planning process in developing, implementing, and maintaining an Individualized Service Plan.”

Source:  NYS OPWDD

(If you would like to receive a list of Medicaid Service Coordination agencies, please contact the Parent Coordinator).

New York State Institute on Disability, (“NYSID”) offers the following services for families with developmental disabilities:

• Family Emergency Reimbursement
• Recreation/Family Outings
• Bronx Non-Camp Vacations
• Camp Reimbursement
• Respite Vouchers
• Car Service Vouchers

To receive an application or additional information, please contact NYSID directly at (212) 229-3273, (718) 494-6457 or email eliznysid@si.rr.com.  The Parent Coordinator at your child’s school also has applications available.

For information about special needs planning, special education advocacy or guardianships, visit www.specialneedsnewyork.com.

Posted in medicaid, New York Special Needs, Special Education Advocacy, Special Needs Trusts | Comments Off on Respite Services
Tags: denise horsford, medicaid, medicaid service coordinator, msc, new york state institute on disability, nys opwdd, nysid, parent coordinator, respite services ny, respite services nyc, respite services nys, special needs child, special needs parent

As the Presidential election approaches, and local, state and national candidates begin their campaigns, special needs voters are beginning a campaign of their own.  The Arc of the U.S. has launched its “We’ve Got the Power” initiative to encourage people with disabilities to participate in the political process.

One facet of the program is promoting voter registration among people with disabilities.  The right of disabled people to vote is well-established in national and international law.  The 2002 Help America Vote Act provides that each voting site must have an accessible booth where voters with disabilities can cast their ballots independently and privately.  In addition, the United Nations Convention on the Rights of Persons with Disabilities has stated that member nations must ensure that persons with disabilities are able to vote and be elected to public office.

In short, unless a judge has declared a person to be ineligible to vote due to incapacity, imprisonment or a felony conviction, every citizen age 18 or older has the right to vote, regardless of disability.  However, despite the clear legal mandate, special needs voters still face barriers.

The Help America Vote Act (HAVA) of 2002 requires that states:

• Make polling places (including the path of travel, entrances, exits and voting areas of each polling facility, accessible to individuals with the full range of disabilities (i.e. blindness or visual impairment, deafness or hearing impairment, mobility-related, dexterity-related, emotional or intellectual.)

• Provide the same opportunity for access and participation (including privacy and independence) to individuals with the full range of disabilities.

• Train election officials and poll workers on how best to promote access and participation of individuals with the full range of disabilities with information about the accessibility of polling places.

The New York State Board of Elections can provide further assistance to voters upon request. To facilitate voter accessibility, poll workers are trained to:

• Treat voters with dignity
• Effectively communicate with voters
• Interact with voters
• Use positive language
• Practice natural communication
• Act appropriately around service animals
• Offer assistance for all access needs

In 2008, more people with disabilities voted in the general election than at any other time in history, but the voting rate remains lower than that of the general population.  Special needs voters have encountered problems such as accessible voting booths located in inaccessible locations, and malfunctioning technology.

The Arc aims to make a positive change.  The “We’ve Got the Power” campaign encourages people with disabilities – and their supporters – to register to vote, and educates candidates and the public about issues of importance to the special needs community.  For more information, visit www.thearc.org.

To read more about HAVA,  click here. To visit the New York State Board of Elections, click here. For assistance with questions regarding the legal rights of people with special needs, visit our website at https://www.specialneedsnewyork.com/.

Posted in New York Special Needs, Special Education Advocacy | Comments Off on Special Needs Voters Work for Access

A new treatment and research facility for autism is under construction in White Plains, New York.  The Center for Autism and the Developing Brain will be part of New York-Presbyterian Hospital.  The center broke ground on April 4 and will open in 2013.

The new facility will provide a wide range of clinical services to people living with autism spectrum disorders (ASD) and other developmental disorders.  The center is a collaboration between the hospital, Weill Cornell Medical College, and Columbia University, along with the New York Center for Autism.  It will be located at New York-Presbyterian’s 214-acre White Plains campus.

Until the center opens, the hospital provides limited clinical services at a temporary location on the hospital grounds and offers ASD assessments through participation in their research studies.  When the permanent center opens, insurance will be accepted, including Medicaid in some situations.

According to the Centers for Disease Control (CDC), the prevalence of autism is continuing to increase.  The CDC found that, in the communities they studied, the prevalence of autism had increased from one in 88, from one in 110.  Autism continues to be more prevalent in boys than in girls, with one in 54 boys and one in 252 girls in the research group being diagnosed with ASD.  It remains unknown whether the increase is due to more careful diagnoses or another factor.

For assistance with questions regarding your child’s special needs visit our website at https://www.specialneedsnewyork.com/

Posted in New York Special Needs | Comments Off on New Center for Autism Research to Open in Westchester County
Tags: asd, autism, CDC, new YORK, New York Presbyterian Hospital - White Plains, the center for autism and the developing brain, White Plains NY

New York Governor Andrew Cuomo has proposed legislation that would create new government offices to help prevent abuse against people with special needs.  Now, with unanimous Senate passage, the Justice Center for the Protection of People with Special Needs is one step closer to being created.  The legislation would create the offices of Inspector General and Special Prosecutor for the Protection of People with Special Needs, to investigate and prosecute reports of neglect or abuse.

“I commend the Senate for unanimously passing legislation that will help give more than one million New Yorkers with disabilities and special needs the protections and justice they deserve,” Gov. Cuomo said in a statement.  “Now both the Senate and Assembly need to work towards a final agreement so we can create the Justice Center for the Protection of People with Special Needs this year. New Yorkers who have been the victims of abuse or mistreatment cannot afford any delay in action.”

A grassroots coalition of more than 100 groups has formed to encourage passage of the legislation.  The coalition is reaching out to supporters via social media like Facebook and Twitter, as well as old-fashioned word-of-mouth, and the campaign seems poised for success.

Advocacy groups said that the legislation is needed to protect the civil rights of vulnerable people and help families know that their loved ones are protected from abuse when they are in the care of the state.

“This is a tremendous advance in weeding out, prosecuting and preventing any future NYS based human services work for those who abuse New Yorkers with disabilities,” said Harvey Rosenthal, of the New York Association of Psychiatric Rehabilitation Services, Inc. (NYAPRS).

For more information, visit our website at www.specialneedsnewyork.com.

Posted in New York Special Needs | Comments Off on Governor Seeks to Protect People with Special Needs from Abuse
Tags: abuse, special needs