Results of Support Servive Providers
(SSPs) Program Survey
Thursday, March 4, 2010
By Elizabeth Spiers
Director of Information Services
Interviews were held in January 2009 with ten SSP programs around the country. Organizations interviewed were a mix of state and non-profit agencies. They included agencies for deaf and hard of hearing people with programs for deaf-blind people, agencies for blind and visually impaired people with programs for deaf-blind people, and agencies specifically for deaf-blind people.
The organizations were selected in order to have a representation from all areas of the country. AADB wanted to get input from larger and smaller SSP programs, as well as older, well-established SSP programs and new SSP programs that were set up within the last five years.
AADB wanted to discover the major issues facing SSP programs and how AADB could assist in increasing SSP services around the country.
1. What are the job descriptions and duties of SSPs?
Duties include shopping, recreation, baby showers, weddings, errands, reading mail, community events, recreation, social events, independent living tasks.
One state contracts with a vocational rehabilitation agency to provide SSPs for interview and job-related shopping and for employment. Another uses interveners for deaf-blind people with other disabilities who need additional support.
2. What funding do you receive?
Funding is from state agencies, federal money through an RFP process, a landline telecommunications fund, fundraising events, cash-match agreements with other agencies, and a county tax levy. Two programs are volunteer now and are trying to get funding on local and state basis.
3. What funding challenges do you face?
Several programs reported getting cuts in their budgets and services as a result of the poor economy. One agency uses a fundraiser to fund its SSP program and contributions to that fundraiser have gone way down.
Getting new sources of funding is hard because available sources are limited. Available funding is limited in scope and amount; funding does not always fit the population as it serves only one population but not another. Finding specific funding for SSPs or interveners, for example, is difficult, and it is hard to expand on new programs because of limited funding.
Some SSP program coordinators report that SSPs want to be paid but no funding is available to pay them. Others report that some paid SSPs feel they are not being paid enough.
4. How many deaf-blind consumers are served per year?
The program serving the greatest number of deaf-blind clients receiving all services (not just SSPs) reported that it served 497 clients per year.
The program providing the greatest number of deaf-blind people receiving SSP services only reported that it served 47 clients per year.
The program providing SSPs to the smallest number of deaf-blind consumers provided SSPs to approximately 4 or 5 people at any one time.
Most programs have about 12 to 15 deaf-blind people per year who receive SSP services.
5. How many SSPs are used each year? Do they all have to be in-state or can deaf-blind people from other states use them?
Most programs limit their SSPs to those deaf-blind people who live in that state or region being served (or in one case, a city). Two programs can provide SSPs for out-of-state deaf-blind people on a case-by-case basis.
Most programs have about 20 to 25 SSPs a year. The program with the highest number of SSPs has 50 SSPs.
The smallest uses about 15 SSPs a year, and the next smallest has a pool of 15 to 20 SSPs.
6. What are the challenges and issues you face when recruiting and working with SSPs and deaf-blind consumers? Can friends and family members be SSPs?
Training SSPs are a challenge: meeting people with different needs, traveling to rural areas and matching SSPs and deaf-blind people who live far from each other.
SSPs and DB people don’t always get along or are not a good match. Some SSPs and deaf-blind people don’t always understand roles or boundaries, or follow rules or guidelines. Sometimes SSPs take over and act as instructors or interpreters. Deaf-blind people can overuse SSPs, and sometimes SSPs help more than they should. Some new SSPs are awkward at the beginning.
SSPs sometimes have trouble making commitments or managing their time. Distance is a problem too since some SSPs have to travel long distances to meet deaf-blind people. Most programs don’t hire family members because of boundary issues (e.g, family members might tell consumers what to do); friends are fine. One program does train friends and family members.
Many deaf-blind people prefer to use family and friends as SSPs or they are new to the concept of SSPs; it is hard to convince them to use outside people because they don’t feel comfortable with strangers. Some programs arrange get-togethers with SSPs and deaf-blind people prior to matching them so they will feel more comfortable with each other.
Also, some deaf-blind people don’t identify themselves as deaf-blind (e.g, seniors with hearing and vision loss).
Serving Deaf-Blind People with Special Needs
An additional challenge exists: trying to serve deaf-blind people who need services but don’t meet existing funding requirements, or serving deaf-blind people with special needs--e.g., those in assisted living centers who have medical needs but can go on outings.
Providing services to deaf-blind people with medical issues is problematic. Some state rules prohibit an SSP from helping a deaf-blind person with medicine or taking that person to the emergency room, but sometimes these things happen.
Payment and Insurance Issues
There is a high turnover of SSPs and not enough SSPs. Also, finding qualified SSPs is not easy to do, and making the right match of SSPs and consumers is challenging. It’s hard to find and retain some SSPs because they are temporary workers without benefits. Some programs who use SSPs as contract workers report that It can be difficult to get SSPs to understand they are contract workers, not part-time workers.
Paperwork to process SSP applications can be long and the wait long also (they have to have background checks). Some SSPs get impatient with this. Also, deaf-blind people may need SSPs right away.
Insurance presents a problem. In most programs, SSPs need to provide their own car insurance. One state will pay 100% for workman’s comp, but not for accidents. Also, there is no insurance to cover another person other than the SSP and deaf-blind person (such as an SSP going on an appointment with a deaf-blind person and a dependent child).
Sometimes deaf-blind people cannot pay their share of the expenses--gas or parking, for example.
7. When did you first start providing SSP services and how did you start them? Did you or do you collaborate with other organizations to provide or advocate for SSP services?
The oldest SSP program started in 1986; the newest began in 2005.
In several states, deaf-blind people advocated for SSP services with their legislators in conjunction with agencies for the deaf and the blind, families, friends, parent groups and professionals.
Federal funding was used through an RFP process to start up services.
Parents of deaf-blind children using interveners advocated for SSP services for their adult children, along with schools and agencies for the blind, deaf, and volunteer groups.
Deaf-blind consumers requested SSP services and a group of deaf, hearing and deaf-blind people got together to set up volunteer SSP services.
8. How can AADB help with increasing SSP services and making it easier to provide SSP services?
- Increase awareness of SSPs
- Document the need, benefits and value of SSP services. Increase awareness of SSPs as professionals so legislators are more familiar with the concept. Educate the public about SSPs and their roles as professionals.
- Encourage the term and concept of SSPs to be standardized. Develop a national certification program for SSPs. SSP roles should be expanded to include intervener or interpreting services.
- Set up separate organization for SSPs, like RID for interpreters. Increase recognition of SSPs so they are as equally recognized as interpreters.
- Increase SSP services
- Advocate for a national SSP program. Advocate for passing of federal legislation that will require SSPs in all states. The federal government needs to pass a bill requiring that all states provide SSP services. Continue to work on getting seed funding to set up model state SSP programs for others to follow. Provide support to identify funding sources for SSPs and organization of SSP networks.
- Set up or advocate for SSP models that would enable children needing intervener services to transfer into SSP services as they become adults.
- Advocate for payment of SSPs
- Insurance companies should be billed for SSP services and it should be easier to use Medicare or Medicaid to pay for them.
- Work with federal government to develop RFPs to develop model SSP training programs out of community colleges. Work with colleges or universities so that students can get internships for being SSPs.
- Cover gaps in services (for example, out of town deaf-blind people coming to conferences or recreation); establish funding for special events like recreational skiing.Provide legislative training for deaf-blind people
- Provide training for and persuade deaf-blind people to talk with their legislators about SSP services, and build relationships. Provide training on lobbying. Train and teach deaf-blind people about advocacy work since some don’t know that skill.
- Contact senators with a connection to deafness and ask them to support legislation for SSPs–not only legislation but funding for SSPs with it.
- Increase deaf-blind awareness
- Develop a directory of deaf-blind people and SSPs so they can find each other.
- Continue providing awareness of the deaf-blind community.
How to contact AADB:
For more information, or to get permission to reprint, copy or forward this survey, contact: